Focus on Reproduction ESHRE, ianuarie 2011


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Focus on Reproduction ESHRE, ianuarie 2011

  1. 1. Focus onREPRODUCTIONEuropean Society of Human Reproduction and Embryology // JANUARY 2011 // Robert Edwards honoured as Nobel prize winnerl ESHRE newsl Fertility preservation in womenl Charting the progress of IVF in Germany
  2. 2. EXECUTIVE COMMITTEE Chairman Focus on Luca Gianaroli (IT) Chairman Elect Anna Veiga (ES) Members REPRODUCTION Ursula Eichenlaub-Ritter (DE) Jean-François Guerin (FR) l Chairman’s introduction Timur Gürgan (TR) Antonis Makrigiannakis (GR) Carlos Plancha (PT) This new year issue of Focus on Reproduction reflects a Françoise Shenfield (GB) rich vein of events related to ESHRE and assisted Miodrag Stojkovic (RS) reproduction but none more so than the award to Robert Anne-Maria Suikkari (FI) Edwards, the founder of our Society, of the Nobel prize Etienne Van den Abbeel (BE) Heidi Van Ranst (BE) ‘for the development of in vitro fertilization’. This Veljko Vlaisavljevic (SL) prestigious and long-deserved honour, awarded to the man Ex-officio members who inspired our work, takes on even greater significance Joep Geraedts (Past Chairman) as a mark of recognition for reproductive medicine among Søren Ziebe (SIG Sub- the leading disciplines of medicine. committee) ESHRE’s scientific activities, the core of the Society, have FOCUS ON REPRODUCTION now maintained their high standards over many years, and EDITORIAL COMMITTEE it was richly deserved that the European IVF Monitoring consortium celebrated its Paul Devroey tenth anniversary with a commemorative meeting last September in Munich. We Bruno Van den Eede also took part with the ASRM in the third consensus workshop on PCOS, this Hans Evers time on its non-fertility health implications. The report from the first consensus - Joep Geraedts on the diagnosis of PCOS - has become a citation classic. Luca Gianaroli From a social perspective, the European legislative framework for ART is Hanna Hanssen Anna Veiga presently going through something of a turmoil. Legislations in several countries Søren Ziebe (Germany and Malta, for example) are being exposed to the legal test following Simon Brown (Editor) judgements from different national and international courts. I am proud to report that in most of these cases ESHRE has been chosen as an authoritative and Focus on Reproduction is published by privileged interlocutor by the governments dealing with them. The European Society of Human Particularly significant in this same context was the participation of ESHRE in Reproduction and Embryology the European Health Forum held in Gastein, Austria, in October. This meeting was Meerstraat 60 Grimbergen, Belgium a unique opportunity to present our view of the current problems in reproductive health to an audience of healthcare managers and European policymakers. It seems likely that 2011 will see many changes as far as these issues are concerned, which All rights reserved. hopefully will prompt greater harmonisation in European legislation, a goal that The opinions expressed in this ESHRE has always pursued. magazine are those of the Several opportunities are now opening up for ESHRE outside its traditional authors and/or persons interviewed and do not necessarily reflect the fields of interest. A collaboration between our Task Force on Management of views of ESHRE. Fertility Units and a leading insurance group is behind a workshop planned for Venice in February. This will be the first time that professionals in the fields of JANUARY 2011 ART and insurance have collaborated in such a way, but, as the Task Force reports Cover picture: in this issue, there are clear areas in the management of fertility centres where we can improve, both for the sake of ourselves the professionals and our patients. Luca Gianaroli ESHRE Chairman 2009-2011 CONTENTS NEWS FEATURES 4 Rome 2010 reviewed 32 Fertility preservation in women 6 Robert Edwards Nobel laureate Richard Anderson and Claus Yding Andersen review progress 10 New data system for PGD Consortium so far and the realistic options 11 ESHRE’s foray into social media before cancer treatment 12 From Fertility Europe 35 One million cycles recorded Markus Kupka on the 14 Ten year review from the EIM story of IVF in Germany Consortium and how its voluntary 17 Third consensus meeting on PCOS registry has recorded every cycle 18 European Health Forum Gastein 20 From the Special Interest Groups 27 From the Task ForcesFocus on Reproduction January 2011 3
  3. 3. ANNUAL MEETINGS 2010, 2011 Rome retrospective Survey reveals high scientific content scores but some dissatisfaction with logistical arrangements A face-to-face survey of 500 participants during last year’s annual meeting in Rome found an enthusiastic response to Deadline for Stockholm abstract scientific content, but a higher-than-usual level of dissatisfaction about the congress venue and transportation submission is 1st February arrangements. As a result, ESHRE’s Executive Committee Full details of ESHRE’s abstract submission policy are has determined to address these problems specifically and on the ESHRE website (, but please ensure they are not encountered again. note: The survey was the fourth to be conducted by ESHRE, l All abstracts must arrive at ESHRE’s Central Office following similar exercises in Lyon (2007), Barcelona no later than 23.59 CET on 1st February 2011. (2008) and Amsterdam (2009). Last year’s questionnaire l Abstracts should be submitted in English only. l Any investigator submitting an abstract can only be covered both organisational and scientific content. the first author for one abstract. As ever, scientific quality - in both the precongress l The material presented should be unpublished and courses and main programme - proved highly rated; on a original material, which has not yet been presented in scale of 1 (minimum rating) to 5 (maximum), scientific any other meeting. content in the invited lectures and oral communication l All abstracts will be refereed ‘blind’. sessions scored 3.9 and 3.7 respectively, ratings consistent l Authors are requested to indicate their preference with those of previous years. Most respondents (75%) for oral and/or poster presentation on the abstract thought the balance of science and clinical medicine ‘just submission form. The decisions of the selection right’, and most (71%) actually took time to view the committee are final. paper posters (a big increase on 2009). It was thus not surprising to find that 51% preferred paper posters, though 22% gave a preference for both paper and electronic which was based on a ten-minute questionnaire interview presentation. This was a big advance in response to poster in Rome, are inevitably the growing pains of a congress viewing opportunities. whose size and shape are so rapidly increasing. ESHRE’s Local chairman Filippo Ubaldi also notes a very Executive Committee now has to plan for a capacity of at favourable response to the congress’s social programme set least 10,000 delegates, and that necessarily limits choice. against the backdrop of one of the world’s most attractive Complaints of those interviewed in Rome were cities. The congress party at the spectacular Villa Miani, concentrated on three organisational aspects: the congress before a panorama of St Peter’s and Rome below, proved a centre itself; transportation; and catering. Many popular and much enjoyed event. respondents were unhappy with the congress venue; the Many of the logistical problems exposed by the survey, congress centre rated a mean satisfaction score of only 3. This rating compared unfavourably with previous venues in Amsterdam (mean rating 3.8) and Barcelona (mean rating 4.3). Venue selection is clearly essential to the success of any annual meeting, and, says the Executive Committee, must be given the highest priority in future. Venue selection - and its location - was also at the heart of transportation complaints, which were mainly a lack ofESHRE CHAIRMAN LUCA buses during off-peak hours. Despite the shuttle service, there were many who complained that access to and from GIANAROLI: ‘THE the congress centre was difficult (and expensive by taxi) SURVEY HAS EXPOSED outside the shuttle time-table, which, says Ubaldi, was PROBLEMS AND WE concentrated on morning and evening peak times. The local MUST LOOK AT THEM.’ organisers and ESHRE’s agents in Rome did their best with 4 Focus on Reproduction January 2011
  4. 4. Scientific content in all parameters measured scored highly among the survey respondents.the shuttle services within a reasonable budget, but clearlyease of travel - preferably by public transport - is apriority for future consideration. Catering in Rome also scored poorly, with a meansatisfaction score of just 2.4. Complaints were mainlyfocused on lunch queues on the opening Monday, whencatering services proved inadequate for such numbers.Food quality was always high, however, and the logisticsof service had improved dramatically by Tuesday. ‘We were not happy with some of these findings,’ saidESHRE’s Chairman Luca Gianaroli, ‘and it’s clear thatmany participants were disappointed in some of theorganisational arrangements. The survey has exposedproblems and we must look at them. I want to reassureour members that we will do our best - even at the earlieststage of venue selection - to ensure we don’t have such A big advance in numbers viewing both paper and electronic posters.complaints again.’ Gianaroli was also confident that many of the logisticalproblems reported in Rome will not be encountered thisyear in Stockholm. The venue, Stockholmsmässan, isfamiliar with large medical congresses and importantly isjust nine minutes away by commuter train fromStockholm Central Station. Trains are frequent andefficient, and the congress station is just a two-minutewalk from the congress centre. The EC and localorganisers will also be paying particular attention tocatering and meeting-room logistics. The invited scientific programme and precongresscourses for Stockholm are already in place, and deadlinefor the submission of abstracts is 1st February. Allabstracts will be scored (blind and weighted) by theScientific Committee. Last year’s event prompted anunprecedented number of abstract submissions, and,despite the shortcomings of Rome, a similar response isexpected this year. Almost 70% of those questioned in The congress party, set against the panorama of St Peter’s and Rome,Rome said they expected to be in Stockholm in 2011.q proved a popular and much enjoyed event.Focus on Reproduction January 2011 5
  5. 5. COVER STORY Bourn Hall days: left, Bob in 2008 at a celebration of 30 years of IVF; below, Lesley Brown with Louise in 1978, and in 2008 at Bourn Hall with Louise and her own baby. Robert Edwards, joint founder of ESHRE, honoured as Nobel laureate am sure that every member of ESHRE was delighted to hear the Klaus Diedrich, Chairman of ESHRE from 1993 to I news that Robert Edwards had been awarded the Nobel Prize for Medicine. Bob, who was born in 1925, has had to wait many years for this richly deserved appreciation of his lifelong and pioneering 1995 and a member of work. The award is also a tribute to the whole sector of reproductive the Society’s original medicine. Bob’s original work was in physiology at the University of temporary committee, Cambridge. As early as the 1950s he was studying the physiology of the congratulates Bob oocyte and the control of maturation, and by the 1960s had achieved the in vitro fertilisation of an oocyte in an animal experiment. Edwards on this much It was in the late 1960s that Bob, who by now was Head of the deserved honour and Department of Physiology in Cambridge, met the gynaecologist Patrick Steptoe. The latter was head of department in Oldham, UK, and one of recalls his distinguished the pioneers of laparoscopy. Before then the retrieval of oocytes was place in ESHRE’s history. performed via laparotomy - unthinkable to Edwards and Steptoe even at that time. They thus developed a concept for detecting the time of optimal oocyte maturation for the retrieval of oocytes by laparoscopy. And, as might be expected with Bob’s experience in animal models, it Pictures: did not take long before the first in vitro fertilisation was achieved. Robert G. Edwards - Photo Gallery. Embryo survival, however, proved a challenge, as did the ESHRE archives Klaus Diedrich encouragement of his peers and financial support. But Bob and Patrick6 Focus on Reproduction January 2011
  6. 6. ESHRE days:never gave up, and in 2008 Bob recalled: ‘I in Lübeck in 1983. top, welcoming Patrick Steptoe to ESHRE’s firstwill never forget the day when I first saw a The third World Congress of IVF was held annual meeting in Bonn,human blastotocyst under my microscope. It in Helsinki in 1984 and it was here that Bob 1985, with joint founderwas wonderful.’ This happened in 1972, but it and the French gynaecologist Jean Cohen set Jean Cohen and localwould take six more years before the first IVF about the creation of a European society in congress chairman Klaus Diedrich;baby, Louise Brown, was born. That world- reproductive medicine, which would very soon above left, in 2004 withfamous team of Edwards and Steptoe become ESHRE. From then on ESHRE ESHRE’s chairmen thus farcontinued to work together until Steptoe’s congresses were held every year, and even the (l to r), Pier Giorgiodeath in 1988. first, which I organised in Bonn in 1985, Crosignani, Basil Tarlatzis, Jose Egozcue, Lynn Fraser, * * * * began with 650 participants. Even so, it was Klaus Diedrich, Jean Cohen,I first met Bob in 1978 at a reproduction still possible for Bob and Jean Cohen to greet Bob Edwards, André Vanmeeting in Japan. At the time societies in everyone personally at the door. Steirteghem, (seated) Arnereproductive medicine were springing up all Edwards was the founder and for many Sunde, Hans Evers; above right, acceptingover Europe, and the foundation of our own years the editor of ESHRE’s journals Human honorary membership ofsociety in Germany took place with the close Reproduction, Human Reproduction Update ESHRE in Thessalonikicollaboration of our colleagues in Britain. We and Molecular Human Reproduction. These 1993.had three centres performing IVF: in Erlangen remain among the leading international titlesunder the lead of Siegfried Trotnow, Lübeck in O&G and reproductive biology. Bob alsounder Dieter Krebs, and Kiel under Lieselotte founded Reproductive Biomedicine Online inMettler. Germany’s first IVF baby was born in 2000, following his resignation from theErlangen in 1982 (see page 35) and a second editorship of Human Reproduction. It was aFocus on Reproduction January 2011 7
  7. 7. Bob makes the front cover of a 1993 Focus on Reproduction alongside ESHRE’s next four chairmen: Van Steirteghem, Cohen, Crosignani and Diedrich; right, with a note to Klaus Diedrich after the first ESHRE congress in Bonn, 1985. move typical of his character, always searching for new things to discover, realising new visions. Indeed, in reproduction he was the first to cryopreserve surplus embryos and perform time with him, and I am proud to say that Bob was preimplantation diagnosis on animal embryos, awarded honorary membership of the German confident that both techniques would be developed Society of Obstetrics and Gynecology when Dieter for human application. Remarkably, he had Krebs led the society’s congress in Berlin in 1992. experimented with in vitro maturation and The Nobel prize is a fitting tribute to the influence fertilisation in animal models as early as 1965. that Bob’s work has had on infertility throughout Bob and I organised many conferences and the world and for so many years. The members of workshops together, and he was the scientific father ESHRE congratulate Bob and send him their kindest of many German endocrinologists - as well as the regards. driver of infertility treatment in Europe. It was Klaus Diedrich always a special and inspiring experience to spend University of Lübeck, Germany Ruth Edwards accepts the prize on his behalf Too unwell to be in Stockholm for the Nobel prize ceremony in December, Bob was represented by his wife Ruth (who as Ruth Fowler had collaborated with him on several papers on the induction of ovulation in mice in the 1950s). His absence meant that the traditional lecture given by each Nobel laureate was replaced by a symposium in Bobʼs honour. The principal speaker was one of Bobʼs former students in Cambridge, Professor Martin Johnson, who in a detailed and finely illustrated lecture described the many years of research which lay behind the triumph of Louise Brownʼs birth. Professor Johnson closed his lecture with two moving film clips of Bob describing his first association with Patrick Steptoe and forecasting that ʻnext yearʼ (this was shortly after the opening of Bourn Hall in 1981) ʻ1500 IVF babies would be born worldwideʼ. Two follow-up lectures - on the development of IVF and its future directions - were given by Lars Hamberger, whose group achieved Swedenʼs first IVF success in 1982, and Outi Hovatta of the Karolinska Institute. The Nobel Prize in Physiology or Medicine is awarded by the Nobel Assembly at the Karolinska Institute. Martin Johnson delivers the symposium’s first lecture, with Ruth Edwards (inset) also present.8 Focus on Reproduction January 2011
  8. 8. Six handshakes of separation between the‘Bob picture’ and the rest of the worldFormer ESHRE ChairmanHans Evers with his owntribute to Bob EdwardsDid you ever shake hands with Barack Obama?Does Lady Gaga recognise your e-mail address? Doyou know a Nobel laureate on a first-name basis?According to the ‘small world’ hypothesis proposedby Stanley Milgram, each of us is no more than sixhandshakes away from every other human being onthis planet. In 1967 Milgram developed anexperiment to test his hypothesis that members ofa large social network, in this case the entirepopulation of the USA, would be connectedthrough a relatively short chain of in-betweencontacts. He sent a message to 400 randomlyselected people in Wichita, Kansas, and Omaha,Nebraska, (the starting points) and invited them toforward it to a colleague or friend whom theythought more likely to know a given target personin Boston, Massachusetts (the endpoint), whosename was completely unfamiliar to them. Thereason for selecting Wichita and Omaha at one endand Boston at the other was that according toMilgram they represented as long a geographicaland social distance in the USA as possible. His experiment turned out to confirm the theory; Two ‘Bob pictures’ from ESHRE’s first annual meeting in 1985. Bob greets two future chairmen of ESHRE (the first who insists on remainingit took on average six persons to reach the hitherto anonymous, and the second whom we cannot even identify).unknown target person - a phenomenonwhich later became known as the ‘six On hand was a photographer to owner of a ‘Bob picture’ . . . jackpot!degrees of separation’. The most record the moment, and we all still The Nobel prize has been awardedsuccessful chains were composed of treasure our ‘Bob picture’ from that to Bob Edwards. Finally! The Swedesprofessional rather than social links. occasion - as the many resurrected are a brave and independent bunch.Social networks are usually more photos suggest. Against all odds (ie, the Vatican) theyclosely knit, all members know all And Bob was our introduction to honoured Bob, and they honouredother members and the community of the world at large. He went on to win Alfred Nobel, who died childless andfriends does not usually extend far the Lasker award, the King Faisal thus had to find a destination for hisbeyond its original nucleus. award, and the Nobel prize. After accrued capital. What would be moreProfessional networks are less shaking hands with us (handshake 1) appropriate than a Nobel prize forcompact but they reach farther. in Bad Godesberg he received the fighting childlessness? And what ESHRE is a global network of King Faisal award from the hands of would be more appropriate forprofessional links. At its first annual the late King Fahad of Saudi Arabia ESHRE than to have its annualmeeting, in Bonn in 1985, its (handshake 2), who later shook meeting in Stockholm this year?founding father, the 2010 Nobel hands with George Bush senior And finally, what would be morelaureate Professor Robert G. (handshake 3), the father of George appropriate than for our presentEdwards, personally welcomed every W. (handshake/spanking 4), who chairman, Luca Gianaroli, toindividual participant (all 650 of shook hands with Barack Obama personally greet all participants inthem!) at the entrance to the opening (handshake 5) at the latters Stockholm, the city where Alfredreception in the Redoute in Bad inauguration. So, if next time we Nobel was born, with a welcomingGodesberg. meet you shake hands with the proud handshake?q
  9. 9. // PGD CONSORTIUM // An update from the working groups Gary Harton took over from Joyce Harper as Chair of the Steering Committee in June during last years Steering committee members annual meeting in Rome. Shortly after, a ballot was The current Steering Committee comprises: held to ratify the revised Statutes governing the Gary Harton (US, Chair) running of the Consortium. With the Statutes ratified, Joanne Traeger-Synodinos (GR, Deputy Chair) a vote was held to re-elect current members of the Joyce Harper (GB, Past Chair) Steering Committee and elect two new members to Céline Moutou (FR), Katerina Vesela (CZ), begin their term of office immediately. Sioban Sengupta (GB), Georgia Kokkali (GR), Another round of data collection and analysis is Leeanda Wilton (AU), Martine De Rycke (BE), well under way and will be published sometime this Tugce Pehlivan (TR), Pamela Renwick (GB), year. Our Working Group on Guidelines recently Edith Coonen (NL), Francesco Fiorentino (IT) published a set of four documents as a Best Practice Guideline for PGD and PGS. The documents cover clinical PGD analysis and embryo follow-up results, and Organization of a PGD Center, Polar Body and Embryo give a more complete evaluation of the potential rate of Biopsy as it relates to PGD, Amplification-based PGD misdiagnosis. Additionally, it should identify likely and FISH-based PGD and PGS. The guidelines were reasons of discordance (which could include protocol- published online by Human Reproduction in October. related parameters, embryo quality, embryo biology) We have now formed a new working group to highlighting important criteria for optimising clinical consider array-based testing in PGD, which includes PGD results. Data analysis is on-going for both studies, members of the Consortium as well as non-members with completion aimed for Spring 2011 and results interested in array-based technology in single cell and published as multicentre studies. embryo testing. The Array Working Group will be l The Database working group has updated the chaired by Dagan Wells and Leeanda Wilton and will FileMaker Pro database (see box below); the main hold its first meeting in London in March. modification is the use of OMIM numbers for l The Diagnosis Monitoring and Audit group has indications. In addition, the group has contacted progressed with two follow-up studies for the Patrick Haentjens for statistical analysis of the large reanalysis of untransferred and supernumerary amount of data collected since 1997. We are merging embryos. One study is for PCR-based PGD cycles (co- all databases to allow this analysis.The aim of the coordinated by Joanne Traeger-Synodinos, with Jos analysis is to assess reproductive outcome of PGD, and Dreesen as deputy) and the other for FISH-based PGD to evaluate the evolution of this activity with success cycles (co-coordinated by Tugce Pehlivan, with Edith rates in relation to various confounding factors. The Coonen and Gary Harton as deputies). Data analysis group is also working on new ways to collect and assess should identify the rate of discordance between data on frozen embryo cycles, including from groupsa The new method of data collection will be launched The data can be entered in real time so that an later this year. Submission of data via the current accurate and up-to-date record can be logged for FileMaker Pro system has been problematic and each PGD cycle. There will be an option to enter time-consuming, both for centres entering data and referral data for tracking patient history and the the Consortium steering committee trying to analyse database will incorporate options for embryo freezing it. The new on-line system will be an intelligent and at any stage of the process. easy-to-use method of entering, storing, analysing This is an exciting new venture from which we are and submitting PGD data. This new system will now sure many PGD centres will benefit. All Consortium allow PGD centres to easily analyse their own data. members should wait for the e-mail announcing how Once data is entered, it will be simple to produce to register your centre. Anyone who is not already a tables which include your key quality indicators (or member and wishes to join the Consortium, please key performance indicators), such as number of eggs visit the PGD Consortium web page at collected, number of embryos biopsied, and efficiency of the biopsy, diagnosis, pregnancy rates, Groups/SIG/Reproductive-Genetics/PGD-Consortium delivery rates, and so on. Joyce Harper10 Focus on Reproduction January 2011
  10. 10. NEWS// COMMUNICATIONS //ESHRE tweets to a newcommunity of friendsand fans in the onlineworld of social mediaIt’s now more than a year since ESHRE began its forayinto the social media of Facebook, Twitter and YouTube,and first results - as expected - reflect a relatively high andgrowing level of involvement. We now have more than1300 Facebook fans, with the majority of users apparentlyaged between 25 and 34, and female. Facebook posts havebeen used for press releases, workshop announcements,ESHRE statements and ESHRE news. A click on theFacebook icon on the ESHRE website will take visitorsstraight to their Facebook page and links to all ESHREpostings (which so far total almost 50). Similarly, a click on the Twitter icon will take visitors toTwitter where they can follow ESHRE from their ownaccount, or open a new account. Twitter now lists morethan 180 ESHRE followers - with instant reaction andinter-reaction to ESHRE’s own tweets - which includepatient groups, exhibitors, clinics, journalists and Top, clips from a selection of ESHRE videos can be found on YouTube;government bodies. ESHRE itself follows 25 tweeters, such below, the age range of ESHRE’s 1300 Facebook the BMJ, NatureHealth, New Scientist, and Bionews.Other sites - like Flickr or YouTube - have also been usedby ESHRE to make audio and visual material available, incorporated into one platform for those subscribing toparticularly from last year’s annual meeting in Rome. ESHRE’s RSS feed. Currently, around ten names are signing up each week to A copy of ESHRE’s guidelines on the use of social mediaany of the ESHRE social networks, and all of them can be can be found on the ESHRE website (under ‘ESHRE community’). The guidelines make clear that these new networking technologies are to encourage open dialogue and exchange of ideas. using embryo freezing or vitrification in all IVF cycles. l The main focus of the Molecular Methods group has l The Accreditation working group continues to spread been the primer database, which is available to full the word about improvements in the laboratory Consortium members only. The main aim of the following accreditation and continues to perform a database is to share molecular PGD protocols among yearly survey of the status of accredited centres for full Consortium members. It is hoped that the presentation at the ESHRE annual meeting. The database will benefit PGD groups and allow them to number of centres accredited to ISO 15189 or other save time for optimisation, reduce cost, improve local standards is growing, although at a very slow standardisation, find consensus on specific protocols, pace. It is hoped that an increase will be seen during and be used as a reference. PGD Consortium members this year, as several centres are just in the process of are invited to submit their protocols in order to accreditation. A Campus workshop on Quality populate the database. Any suggestion to Francesco at Management Towards the Accreditation Process is . being planned for Athens in the autumn and will be Gary Harton organised in co-operation with Eurogentest. Chair, PGD ConsortiumFocus on Reproduction January 2011 11
  11. 11. ‘Special Families’ project looks for postcards telling many thousands of stories Fertility Europe’s mission is to bring fertility organisations The idea behind the project is that people send ‘messages together with opportunities for networking and sharing of hope’ - in pictures and words - as an explanation of best practice and information. Well, we certainly did that why a family which had met problems in having a child at our annual meeting in Rome last year. We welcomed 31 now sees itself as ‘special’ in achieving its dreams. The participants representing 19 organisations from 17 pictures and stories, in the native language, are then made countries. into postcards. We unanimously voted in nine organisations as Effective Some of the stories sent in for the pilot were very Members; these were ‘Iskam bebe’ of Bulgaria, ‘Sdruzhenie powerful and show enormous courage and determination - Zachatie’ of Bulgaria, ‘Association Maia’ of France, as well as the multitude of ways for becoming a special ‘Kiveli’ of Greece, ‘Országos Lombikbébi Támogató family. The project has several aims: to raise awareness of Alapitvány’ of Hungary, ‘Nasz Bocian’ of Poland, fertility problems and their impact on those affected; to ‘Associacão Portuguesa de Fertilidade’ of Portugal, ‘SOS show how successful treatment can be and the joy it brings Infertilitatea’ of Romania, and ‘Barnlängtan’ (formerly to people; and to raise awareness of how you can protect IRIS) of Sweden. your fertility. Our aim is for hundreds of thousands of We were delighted to postcards to be presented in Stockholm later this year. welcome Anna Veiga, Chairman Elect of ESHRE, to the Template postcard meeting. Anna spoke for the Special on ‘The latest Families project. challenges in ART’, Fertility Europe which again generated hopes to receive much discussion and many thousands of many questions. We postcards would like to thank Anna for taking time out reflecting theAnna Veiga, impact which theChairman Elect of from what I know was a busy schedule for her in treatment ofESHRE and seen Rome. infertility canhere with sample We also agreed in Rome to form a sub-group have on from the for developing Fertility Europe policy statements,Special Families which includes Sweden, France, Belgium, Czechproject, spoke at Republic and the UK. The first two policyFertility Europe’s statements will be on reimbursement for fertilityannual meetingabout the treatment and single embryo transfer; the draftschallenges now will be discussed and hopefully ratified byfacing ART. members in Stockholm. We do recognise that Fertility Europe is not there to force any one view on members; however, we hope that this initial work will form a template for future policy statements on, for example, surrogacy and donor anonymity. Special Families project One of our most visible activities is the Special Families project, which was successfully piloted So what are our other plans for 2011? ahead of last year’s annual meeting. At the time of l We will consolidate the results achieved in 2010 from writing, we are waiting news of sponsorship but are very enlarging our network of associations as a ‘reliable voice’ confident that the project will continue successfully. at the lobby level. a 12 Focus on Reproduction January 2011
  12. 12. NEWS// LEGISLATION IN EUROPE //Despite protests, Danish Austria granted right togovernment abandons its appeal after European courtpolicy of state-funded ART finds ART law ‘discriminatory’Denmark has formally abandoned its policy of fully state- In April last year the European Court of Human Rightsfunded ART after the Danish government, supported by in Strasbourg upheld the complaint of two Austrianthe Dansk Folkeparti, approved new legislation in mid- couples that Austria’s legal ban on (heterogeneous)December introducing patient co-payment for ART. oocyte and sperm donation was discriminatory and in The move, which became operative on 1st January, was violation of the couples’ rights under article 14 of thestrongly opposed by professional organisations in European Convention on Human Rights on ‘prohibitionDenmark, including the Danish Fertility Society, which of discrimination’, and article 8 on their ‘right tounanimously but unsuccessfully advised against the respect for family life’.introduction of patient co-payment. Now, in November, a five-judge panel of the Court has Denmark’s former system allowed free-of-charge fertility granted Austria the right to appeal the ruling before thetreatment in public clinics up to a maximum a three Court’s Grand Chamber.completed ART cycles for childless couples. Those who The original case involved two couples seekingdid conceive a first child in a public centre were referred treatment for infertility, one of whom required IVF withto a private clinic for subsequent treatments; however, all donor sperm and the other male and female gametemedication costs were reimbursed for all patients, whether donation.for public or private treatments. In its April judgement the Court said that the ‘wish Now, all patients having fertility treatment must pay for for a child’ is protected by the European Convention,their medication (up to a maximum of DKK 15,000 and that its fulfilment through ART should not be[~2000 euro] per year). In addition, in the public clinics a prevented by ‘unjustified discriminations’. ‘Moralfee of DKK 5000 (~670 euro) is now charged for a fresh considerations’, the Court added, or concerns aboutcycle of IVF or ICSI, DKK 3000 (~400 euro) for a frozen social acceptability, ‘are not in themselves sufficientcycle, and DKK 1271 (~170 euro) for a cycle of IUI. reasons for a complete ban on a specific artificialPatients are also charged for any donor sperm used. The procreation technique such as ova donation’.new regulations thus cover all types of treatments -except The April decision created a storm among pro-life(possibly) PDG, which may be free of charge. organsiations, one warning that ‘If this decision is Rates of access to ART in Denmark have consistently upheld by the Grand Chamber, the flood gates will openbeen among the highest in Europe, with registries for the recognition of a protected right for same sexrecording ART birth rates as high as 8-10% of all babies couples to access artificial procreation with egg orborn. Now, says Søren Ziebe, IVF laboratory director at sperm donors exactly like a couple composed of a manthe Rigshospitalet fertility clinic in Copenhagen, there are and a woman’.fears that the uptake of IVF will decline (as happened in ESHRE itself is seeking advice whether it (and otherGermany when patient co-payment was introduced in interested groups) has the right to submit expert opinion2004), treatments will become more aggressive, and the (‘ad adjuvandum’) to the Grand Chamber court.opportunities for research will shrink.l We will also continue to work closely with ESHRE and continue to collect information about ART andin terms of communications and patient representation. national regulation and reimbursement.l We will continue to actively reach out to increase our Do visit our website at to findmembership so that we can all share our activities with out more. And when you do, if you notice that wemore patient organisations and in turn help them in don’t have a European patient organisation listed fortheir work in their own respective countries your country and you know of one, please get in touchl We will continue to review and add content to our with, increase and diversify our income, develop our Finally, but very importantly, we thank ESHRE forFE policy programme, agree our business and processes their continued support.plan, begin planning for ESHRE 2011 in Stockholm Clare Lewis-Jones, Chair Fertility EuropeFocus on Reproduction January 2011 13
  13. 13. EIM CONSORTIUM // TEN YEARS OF IVF MONITORING REPORTS // More than 600,000 ART and IUI cycles now monitored by ESHRE each year High quality measurement is a prerequisite of confidence The Campus event held in September last year to third most active ART country (behind France and celebrate ten years of ESHRE’s European IVF Germany), can provide registry data on only 60% of Monitoring (EIM) consortium was not just about its activity. Moreover, although amendments to reminiscing, nor even about celebrating. This was Spain’s legislation in 2006 required the countrys 17 also a meeting about the EIM’s future and how administrative regions to collect audited data on a many of the problems faced in building a cycle-by-cycle basis, only one - Catalonia - is fully comprehensive database of ART activity in Europe compliant. As a result, said Jose Antonio Castilla can be resolved. from the University Hospital of Granada, the According to the EIM’s present chairman Jacques responsibility for a registry of nationwide ART de Mouzon, the latest round of data collection - for performance is left to the Spanish Fertility Society 2007 - gathered registry data from 32 European (SEF) and a voluntary system of summary reportsMost of the 32 countries (including Turkey) representing 88% of (clinic-by-clinic, not cycle-by-cycle) which arecountries now clinics in these countries. And, while this is more neither audited nor official. Castilla, who is co-supplying registry than enough to provide a realistic picture of ART ordinator of the SEF registry, said that in 2008 nodata to the EIM life in Europe, there are still major omissions. more than 60% of Spain’s ART cycles were reportedwere represented atthe celebration Spain, for example, which is ranked as Europe’s to the registry - and from only 50% of its in Munich. Moreover, the number of centres participating in the scheme in 2008 actually fell by 14% on the previous year. Spain, along with Cyprus, Greece, Switzerland and several countries of eastern Europe, is one of 13 countries to supply only partial information to the EIM. Nevertheless, there was strong representation at this meeting from eastern European registries, including presentations from Russia and Slovenia, and most countries (with the exception of Albania, Croatia, Romania and Slovakia, which did not supply data in 2007) seem keen to be involved. Indeed, Tomaz Tomazevic from the University Clinical Center in Ljubljana, reported that the EIM’s own data reporting system is now the formal mandatory data collection system for the Slovenian Ministry of Health. This official registry, he added, is able to provide ‘optimal endpoint’ data (delivery rate per started cycle) with real demographic impact, for it was on the basis of the annual EIM reports that Slovenia’s public health insurance scheme supported the use of elective single embryo transfer in the first two cycles of treatment by extending coverage from four to six cycles. Such complete systematic reporting - alongside Slovenia’s progressive legislation on ART - is an illustration of how comprehensive data collection can have an effect on national (and Europe-wide)14 Focus on Reproduction January 2011
  14. 14. of such detailed data has allowed benchmarking for EIM data then and now national comparison of efficacy, efficiency, 1997 2007 availability and - to some extent - safety. Certainly, Countries 18 32 with multiple pregnancy the acknowledged major Clinics 482 1016 risk of ART, multiple pregnancy rates and trends as Proportion ? 88% determined by the EIM have reflected ART’s safety Complete reports 10 19 potential as well as its risks. The data, however, have ART cycles 203,893 479,288 not allowed the monitoring of emerging safety IUI cycles None 168,178 parameters, especially in relation to such newly PR per ET IVF 26.1% 32.9% introduced techniques as vitrification or oocyte PR per ET ICSI 26.4% 33.3% cryopreservation. PR per FET 15.2% 22.5% Similarly, the long-term effects of assisted PR egg donation 27.1% 46.3% conception remain beyond the scope of EIM data, SET 11.5% 22.8% and even, in some countries at least, the obstetric DET 35/7% 57.5% outcome of pregnancy. Indeed, the standardisation of Single delivery 70.4% 78.2% all inputs to the database remains a theoretical Twin 25.8% 20.5% objective, said Andersen, although many countries - such as Germany and France - with newly upgraded data systems have the ability to provide detailed cycledemographic initiatives, and this was one of the data with linkage to delivery outcome.EIM’s achievements singled out by its co-founder Taraneh Shojaei reported that responsibility for aAnders Nyboe Andersen. ‘Indeed,’ said Andersen,‘demographic impact is perhaps our finestachievement, and trends identified by our annualreports are now recognised outside the professional Putting the show on the roadcommunity.’ Not only has EIM data confirmed substantialinequalities in access to treatments, but have alsounderlined the ever increasing age of ART patientsand the link between infertility and deferredpregnancy. Such links are now well recognised bythe EU, and the European Parliament’s 2008 reporton ‘the demographic future of Europe’ called on theEuropean Commission to address infertility as ademographic issue; such urging, said Andersen,could not be possible without the strength of theEIM database. The database has also identified a marked butsteady increase in pregnancy rate per transfer ESHREs Executive Committee had already heard one or twothroughout the past decade, which has risen from suggestions for surveillance data collection before Karl Nygren and26% for both IVF and ICSI in 1997 to 33% in Anders Nyboe Andersen, pictured above, submitted a formal proposal2007. Similar increases have been seen in pregnancy in March 1998 for the establishment of a European IVF monitoringrates from frozen embryo transfers (from 15% to (EIM) committee. The two Scandinavians spoke of data monitoring22%) and in oocyte donation (from 27% to 46%). and not data collection, although in their proposal collecting and Andersen further noted that ‘without the EIM auditing data (from national registries) were essential activities.reports no-one would be aware of the positive European monitoring, they said, was needed to prevent IVF activitiestrends’ in the number of embryos transferred. In in any country from derailing as a result of negative publicity.1997 more than one-third of transfers were with The EIM consortium was formally established at the 1999 annualthree embryos, but this rate had more than halved meeting in Tours, and attracted to its first meeting representativesby 2007. Current data suggest that transfer trends from 19 European countries, who each provided an overview ofare now relatively stable; two embryos were national data collection registries.transferred in 57% of cycles in both 2006 and The EIMs first report - on ART activity in 1997 - was published in2007, and one embryo in 22% of cycles. 2000, and its 11th report - on activity in 2007 - presented in Rome However, as Jacques de Mouzon has also insisted, prior to publication. Annual citations of EIM reports now total morethe EIM reports highlight the variability, not the than 100.homogeneity, of European ART, and the collectionFocus on Reproduction January 2011 15
  15. 15. registry data in France has now passed from FIVNAT to the government’s Agence de la Biomedecine (of which she is the evaluation MART safety monitoring department manager), with a legal requirement that project is now ‘making all clinics must participate in the scheme and submit at least summary data, and by 2012 individual cycle real progress’ data. The system, said Shojaei, combines registry, licensing and monitoring requirements in ART with those of the EU’s Tissue and Cell Directives. Similarly, the meeting’s local organiser, Markus Kupka from Munich University Hospital, reported that the German IVF register, whose cumulative data collection is now approaching 1 million cycles since its inception in 1982, allows the submission of individual cycle data through various software packages to a centralised linkage library. A recent analysis performed by the German registry (of almost a half million cycles) suggests that prospective data input is a mark of quality and associated with higher pregnancy rates. ‘Our experience of prospectivity,’ said Kupka, ‘is positive.’ The German data also show that the number of treatment cycles is beginning to rise once again (by around 10% per year) following Following a feasibility report in 2006 and with restrictive changes to reimbursement policy in 2004. funding in place from ESHRE, the University Comprehensive cycle-based systems such as those of Copenhagen and the Danish Agency of in Germany, France or the UK provide what the Science, Technology and Innovation, work on EIM’s other co-founder Karl Nygren called those the MART (Morbidity in ART) project began in ‘high-quality measures which are a pre-requisite for 2008 and has now assembled a provisional building confidence in ART’, and this, he readily database of almost a 100,000 IVF children - acknowledged, was the mission of the EIM’s 21,398 IVF children born between 1984 and foundation more than a decade ago. The challenges, 2007 in Norway, 35,017 in Sweden, 19,065 Nygren added, remain in the definition of ‘key data’ in Finland, and 23,477 in Denmark, all and ‘key outcomes’, but would ideally concentrate matched with around 400,000 controls. on benefit indicators (access, efficacy, safety and The plan now, said Anna-Karina Aaris cost) according to specific interventions. However, Henningsen, pictured above, who is co- there still remains huge variability in definition, ordinating the project from the University tension in the submission of cycle and/or summary Hospital in Copenhagen, is to pool the ART data, and a reliance on extrapolation for data and cross-link with national health system comprehensive coverage. Moreover, said Nygren, registers in the four countries. The sheer size there are still deficiencies in reporting, with many of the cohort, said Henningesen, should reflect pregnancies lost to follow-up and inadequate the prevalence of even rare epigenetic coverage for full risk assessment. disorders or the effects of newly introduced The future, added Nygren, may apply a more techniques. Similarly, the database may well relevant and comprehensive way of reporting over time reflect the perinatal and efficacy (pregnancies, deliveries, singletons, healthy developmental health benefits derived from the singletons . . . ) and a more appropriate definition transfer of fewer embryos. of intervention (started cycles, fresh and frozen, Danish data are ready, and Finnish, Swedish cumulative . . . ), but for the moment he urged and Norwegian data almost available for ongoing surveillance and continuing commitment to pooling. Once completed, the project should the project. There is, he noted, no other comparable not only provide an unequivocal assessment of database in the world, and continuing confidence in the perinatal outcome of 98,957 IVF births in the treatments monitored depends on the these countries, but a clear picture of availability - and transparency - of such data. morbidity trends over time associated with Simon Brown assisted conceptions. Focus on Reproduction16 Focus on Reproduction January 2011
  16. 16. // PCOS CONSENSUS WORKSHOP // Attention now turns to the health risks of PCOS The report from the first joint Somewhat later in the reproductive ESHRE/ASRM consensus conference lifespan, Felice Petraglia, University on the diagnostic criteria for of Siena, reported that the presence polycystic ovary syndrome has, in of PCOS had been associated with a just seven years since publication, higher incidence of miscarriage and become a citation classic. The an adverse pregnancy outcome. There Rotterdam criteria developed at that was some discussion from the floor meeting recognised that women with about the former, with London PCOS represent a heterogeneous endocrinologist Steve Franks population which cannot be defined doubting the strength of the by strict definitions. Thus, miscarriage data, and Rick Legro Rotterdam concluded that PCOS from Penn State College of Medicine might be confidently diagnosed in noting that in the US randomised women with any two of three trials on the use of metformin there features: polycystic ovaries seen on was no difference found in ultrasound, hyperandrogenism and miscarriage rates among the different oligo/amenorrhoea. The NIH criteria of Bart Fauser, chairman of patient groups. However, Petraglia 1990 which the Rotterdam consensus the writing committee emphasised the adverse effects of PCOS on superseded had required only two for this third PCOS pregnancy outcome through the mediators consensus statement. diagnostic features: hyperandrogenism and of gestational diabetes, pregnancy-induced chronic anovulation. hypertension, pre-eclampsia and fetal As of November last year, the Rotterdam consensus growth retardation. He also noted that this adverse report - published jointly by Human Reproduction effect was not just a matter of obesity, citing data and Fertility & Sterility - was HRs most frequently showing far higher rates of gestational diabetes in cited publication, and F&Ss second. PCOS subjects than in those who were only obese. The second consensus statement, like the first, However, in later life the overriding risks of PCOS considered PCOS from the perspective of infertility, lie with type 2 diabetes and cardiovascular health, and developed consensus on treatment. After lifestyle risks which are amplified anyway in obese women. advice, first-line management was defined as Steve Franks cited the observational Nurses Health ovulation induction (with clomiphene citrate) followed Study to show that the risk of type 2 diabetes was by gonadotrophin therapy or laparoscopic ovarian more than doubled in women with a history of surgery and IVF. irregular cycles. Obesity, he added, would increase Now, a third consensus conference, held in that risk. However, Franks emphasised that PCOS is a Amsterdam in November last year, has shifted the prediabetic state which invariably presents at a focus from infertility to the health implications of younger age; thus, diet and lifestyle advice are the PCOS in early and later reproductive life. So its very most important ways for reducing the diabetes risk in different from the two previous statements, said Bart later life. Fauser, chairman of the writing committee, with the And it is, of course, the presence of type 2 perspective now moving from reproductive disorders diabetes which increases the risk of CVD. The to a population deemed at risk of type 2 diabetes and landmark Interheart case-control study found that other cardiovascular diseases. diabetes was associated with a 4.2 relative risk for In the adolescent, however, even the definition of myocardial infarction. Advice from this meeting, PCOS is confusing, according to Leeds gynaecologist therefore, was to take a multifactorial approach, with Adam Balen, a member of the six-man writing the usual recommendations of weight loss, exercise, committee. Many of the normal features of smoking cessation, and medication. adolescence are similar to those of PCOS, he said, Fauser expects that this broad-scope consensus such as ovarian morphology and cycle regularity. statement will be published later in 2011. Its However, Balen confirmed that oligomenorrhoea development is now in the hands of a writing persisting two years after menarche in the adolescent committee composed of three ESHRE and three is an early sign of PCOS - and a better predictor than ASRM representatives, and publication will once LH or androgen concentrations. again be a joint exercise by both groups’ journals.qFocus on Reproduction January 2011 17
  17. 17. ESHRE NEWS // EUROPEAN HEALTH FORUM // The legislative inconsistency behind cross-border reproductive care ESHRE’s perspective at waiting times for treatment, cost, success rates and availability of donor gametes as the leading reasons for Europe’s leading forum travel. ‘Perhaps it’s because their fertility declines as each for health policymakers month goes by which makes waiting time so sensitive,’ said Clare. Almost all patients (88%) made travel and clinic arrangements themselves, and most were happy with the ESHRE took part in Europe’s leading conference on health outcome. policy in October last year, hosting a workshop on The increasing attraction of clinics in eastern Europe, ‘Individual choice in reproductive health’. The workshop, said Clare, is cost and limited regulation, with prices in which took place at the European Health Forum in Romania, Ukraine and Russia reportedly a quarter that of Gastein, Austria, considered infertility and its treatment private treatment in western Europe. However, her from the perspective of the patient, the drug industry, the underlying theme was the inconsistency of treatment politician and society. regulation throughout Europe. Her recommendations on However, all four presentations ultimately pointed in the behalf of the patient were: one direction of cross-border reproductive care and the l Consistent regulation and recommendations across the multiplicity of regulation and practice now present in whole of Europe, with the same rules applied Europe. It is this very multiplicity - as the panel discussion l Standardised health information (in a range of made clear - which is now driving cross-border movement languages) from health professionals/governments/EU and in European fertility treatment. patient organisations In particular, Clare Lewis-Jones, chair of Fertility Europe l A common minimum standard of care across Europe and speaking on behalf of the patient, described a l Consistent counselling support patchwork of legislation and reimbursement policies which Similarly, from the social perspective ESHRE Chairman made, for example, anonymous donor insemination Luca Gianaroli defined the controversies in ART as allowed in France and Belgium, but outlawed in the surrogacy, anonymous and non-anonymous gamete Netherlands, Germany and UK. donation, embryo freezing and PGD, which were each A survey performed by Infertility Network UK on ‘the reflected in inconsistent national legislation. However, the attraction of overseas clinics’ for UK patients found short legislative anomalies, he said, are increasingly subject to The workshop was chaired by ESHRE’s Past Chairman Joep Geraedts, with presentations by (left to right) Luca Gianaroli, Clare Lewis-Jones, Joan-Carles Arce, and Isabel de la Mata Barranco.18 Focus on Reproduction January 2011
  18. 18. ‘Heterogeneous legislation’ also blocks industry’s ‘stagnating’ fertility development pipeline Despite a background of great social and medical need and an ART success story which boasts delivery rates comparable to spontaneous conception, industry research into fertility now commands only a minute proportion of an annual R&D expenditure of $34 billion. Based on data from 22 pharma companies and bundled into the category of GU/sex hormones, fertility (alongside contraception, menopause, BPH and erectile dysfunction) represents no more than 3% of industrys total R&D budget, with little prospect of any advance, according to Joan-Carles Arce, Vice President of Clinical Research & Development at Ferring Pharmaceuticals. He described the development pipeline of the three big players in fertility as stagnating, with only two new entities in phase II, and just one in phase III. Past developments, he added, have not realised aims to improve efficacy or safety, but have improved convenience (in new presentations, delivery routes, and longer action). Dr Arce described biomarkers for diagnostics and treatment, drug delivery technology, and embryo selection processes as new areas with potential for progress. However, he said, any pharma developments in fertility today are constrained by complex targets (notably confined to sub-groups of patients), increasing regulatory requirements (for documenting efficacy and safety), heterogeneous legislations, a necessity to duplicate clinical trials, and cost. There is, he added, a need for joint efforts between industry, governments and organisations to allocate resources and establish structures to ease the burden of infertility, and for realistic drug development objectives and reward to stimulate further development activities in challenge. Gianaroli not only cited the successful concerns and amendments over the outward flow ofchallenges to Italy’s Law 40 requirements (to transfer all patients (and whether prior authorisation is necessary forfertilised oocytes), but a 2010 judgement from the hospital procedures) and over the quality and safety ofEuropean Court of Human Rights that Austria’s Artificial care. Many member states had insisted that priorProcreation Act - which disallows gamete donation - was in authorisation should be necessary, while the Commissionviolation of the Convention because the claimants could itself insisted that any prior authorisation would be annot conceive by any other means than gamete donation. obstacle to the free movement of citizens - which the Court The European overview presented by Gianaroli - as also of Justice would not allow.found on the ESHRE website under ‘Guidelines and Legal’ Now, in its final draft the Council has not only agreed- proved salutary to the audience of health policymakers, that patients are to be reimbursed up to the level theywho appeared astonished at the disparities. ‘There can be would have received in their home country (ie, what wouldno other areas of medicine with such diversity of have been paid for by its own social security system) butlegislation,’ said one bemused guest from the floor. has also added a new provision that member states may decide to cover other related costs, such as accommodationEU cross-border directive and travel expenses (which may still need priorWhile ESHRE’s own Task Force on cross-border authorisation). The latest draft thus lists reasons whyreproductive health is moving ahead with its own member states may refuse authorisation, which seem toguidelines, Isabel de la Mata Barranco, a Principal Adviser involve entitlement to treatment, standards and the European Commission (DG SANCO) with a special The draft also suggests that each member state mustinterest in public health, reported that the draft directive on ensure, via ‘national contact points’, that patients fromcross-border healthcare (which was approved by the other EU countries can receive information on safety andCouncil of EU ministers in June 2010, backed by the quality standards to make an informed choice.Parliament’s public health committee in October, and is It now seems that the draft proposal has broad supportnow in its second reading in Parliament) will only allow in the EU Parliament and is likely to be accepted at itsreimbursement of costs up to the amount that would have second reading this year. Should that happen, the directivebeen paid had they received that treatment at home. could be adopted as ‘soft’ law by June.Procedures not allowed (or not reimbursible) in the home Speaking to the press in October last year, French MEPcountry will not be reimbursed. Françoise Grossetête, who has been the Parliament’s The directive, said Ms de la Mata, is intended to smooth rapporteur on the directive, said: ‘This directive is designedcross-border healthcare and ensure free citizen movement to allow patient mobility. We already have mobility ofamong member states (in compliance with Article 25 of the workers and students. It’s part of the fundamental rights oforiginal treaty of Europe) while ensuring each country’s European citizens. This does not however encouragerights to run its own health systems. medical tourism. We simply want to allow a wider range of The directive has been bogged down in financial public health for patients.’qFocus on Reproduction January 2011 19
  19. 19. SPECIAL INTEREST GROUPS // REPRODUCTIVE ENDOCRINOLOGY // New elected officers in place after Stockholm The SIG RE ended 2010 with period. Examples of how continuing activity in joint Officers nutrition, environmental factors meetings, the latest in September Adam Balen (GB), Co-ordinator and fertility interventions may in Dubrovnic, Croatia, on ‘A Richard Anderson (GB), Deputy Co-ordinator affect developmental healthy start - The determinants of Juan Garcia-Velasco (ES), Deputy Co-ordinator endocrinology, long-term health a successful pregnancy’. This was a Georg Griesinger (DE), Junior Deputy and fertility in the offspring will joint Campus event with the SIGs Nick Macklon (NL), Past Co-ordinator be reviewed, and intervention Early Pregnancy and Reproductive strategies discussed. Surgery but unfortunately there were fewer delegates than We agreed at our AGM in Stockholm that this year’s speakers - a great shame, as the quality of the precongress course will be titled Ovarian ageing and will presentations and the high level of discussion were very cover the formation of oocytes in the ovary and stimulating. We do need to ensure that our meetings are determinants of their rate of loss. The causes and well attended, especially as they are now held in varied management of premature ovarian failure will also be locations and our speakers take a lot of time out of busy described, as will ways to preserve fertility by oocyte or schedules to share their knowledge and participate in our ovarian tissue cryopreservation. The day will conclude academic sessions. with a socio-ethical talk on the effect on society of The third joint ESHRE/ASRM PCOS consensus meeting postponing pregnancy. on medical problems associated with PCOS took place in We shall be holding a further training workshop with November hosted by Bart Fauser and Basil Tarlatsis, both our colleagues in the Paramedical Group and SIG former co-ordinators of the SIG RE. The programme Embryology in St Petersburg, Russia, from 7-8th started with a one-day open meeting and continued with a September. The first of these courses in Kiev last May was two-day, closed consensus workshop along the lines of the very popular and so we encourgae you to register early! earlier Rotterdam and Thessaloniki meetings. As our short We are also considering a meeting on PCOS for Bulgaria report on page 17 indicates, the aim was to develop a later in the year. consensus on the impact of PCOS on early and later reproductive life, and those aspects not necessarily seen . . . and into 2012 from a fertility perspective (as in the two previous reports). The precongress course in Istanbul in 2012 will be Thus, on the agenda were quality of life, obesity, hyper- Optimising the IVF protocol and the use of adjunctive androgenism, pregnancy and, in later reproductive life, therapies, covering such controversial issues as aspirin, type 2 diabetes, the menopause and cardiovascular health. DHEA, growth hormone, steroids, heparin, acupuncture, homeopathy etc, etc... Training programme in 2011 Also in 2012 we plan an update on the use and role of For 2011 we encourage you to register for the first GnRH antagonists to be hosted by Georg Griesinger in Campus in Kempten, Bavaria, on 4th February on ART Luebeck, Germany. And in the Spring in Lille, hosted by and the oncological impact, hosted by Ricardo Dideir Dewailly, an update on AMH. We also have a Felberbaum. The programme includes presentations on: proposal for a meeting in Montenegro to be hosted by Sexual steroids and their oncogenic potency; Estrogens, Tatjana Motrenko Simic, the programme for which is still endometriosis and ovarian cancer: is there a missing link; to be finalised. Cancer incidence in infertile women after COH; Incidence I stand down as Co-ordinator of the SIG RE in 2011 of malignancies in children born after IVF - results of and would like to thank the committee for their hard epidemiological studies; Ovarian protection during work, help and suggestions. Georg Griesinger takes over as chemotherapy by GnRH agonists. Co-ordinator at Stockholm. We have just held our first Nick Macklon will be hosting The embryo as patient on fully open election to the committee and we are pleased to 13-14th May in Winchester, UK. It is now clear that the announce that joining as Deputy Co-ordinators are Frank periconceptional period determines not only perinatal Broekmans and Stratis Kolibianakis, with Daniela outcomes but has an impact on the long-term health of Romualdias the new Junior Deputy. I wish Georg and his mother and child. This one-day course will cover the new team all the very best for the coming years. evidence base supporting the developmental origins of Adam Balen health and disease (formerly referred to as the ‘Barker Co-ordinator SIG Reproductive Endocrinology hypothesis’), and how this relates to the periconceptional Focus on Reproduction January 2011
  20. 20. // SAFETY & QUALITY IN ART //Central Office research support for guidelinesIt is now three years since an design, preparation, review,invitational meeting was convened Officers dissemination and evaluation ofby the SIG Safety & Quality in Petra De Sutter (BE), Co-ordinator guidelines. And it was according toART (SQUART) - represented by Karl Nygren (SE), Deputy Co-ordinator these internationally acceptedPast Co-ordinators Christina Bergh Willianne Nelen (NL) , Deputy Co-ordinator criteria that the SIG SQUARTand Jan Kremer - in Nijmegen to Jan Kremer (NL), Past Co-ordinator developed an ESHRE manual forconsider the future of ESHRE’s guideline development; theclinical guidelines. After two days of discussion, guideline programme has now become one of the corerepresentatives of ESHRE’s SIGs, journals and Executive activities of the SIG SQUART, with Willianne Nelen asCommittee (as well as the Cochrane Collaboration) programme co-ordinator.concluded that ESHRE, as an authority in reproductive Publication of the ESHRE manual for guidelinescience and medicine in Europe, does have a responsibility development has in the meantime also sharpened the rulesto set guideline standards for high-quality clinical practice. for publication of other ESHRE documents. Thus, anyThus, at the end of this meeting the ESHRE guideline ESHRE document (eg, position statements, specialityprogramme was born - at least in name - and the rules of reviews, notice of intention and clinical guidelines) mustthe game determined. now either be commissioned by the Executive Committee The overall aim of the guideline programme is to itself or its subject approved in advance. In addition,decrease practice inconsistency and increase the overall manuscripts must be posted on the ESHRE website forquality of patient care in reproductive medicine in Europe. review by members (fixed as one month) before theirThus, it was agreed that the guidelines emerging from the publication. The rules, said past ESHRE Chairman JoepESHRE programme would be authoritative, based on the Geraedts, were introduced to bring some consistency - asbest available evidence (most relevant and highest level), well as authority - to the increasing output of ESHREreliable and consistent in style and approach. It was clear documents, and an accepted and uniform methodology forthat such guidelines would be aimed at professionals composition and approval will inevitably raise the value of(doctors, scientists, paramedics, etc), with patients the documents.involved as stakeholders in a consultation process. However, the principal aim of the manual is to provide aProduction would be according to up-to-date process and stepwise practice tool for members of ESHRE’s guidelinequality indicators. development groups and is available for consultation on The development of clinical guidelines has generally the ESHRE website. Each chapter of the manualbecome a formalised process in recent years. Instruments corresponds with one of the interdependent activities ofsuch as that of the Appraisal of Guidelines for Research guideline development (eg, scoping, search and selectionand Evaluation in Europe (AGREE) collaboration (see of evidence, dissemination) and consists of a description, provide structures for the an overview in flow chart form and some practical a ESHRE’s new research specialist for guideline development The missing link in full-speed ESHRE guideline development has been the absence of a research specialist, but now, with the addition of a full-time researcher in Central Office from October last year, that gap has ben filled. Nathalie Vermeulen, 27, has been appointed as a research specialist on behalf of the ESHRE guideline programme. She graduated in biochemistry from Leuven in 2005 and obtained her PhD on serological markers in inflammatory bowel disease in January 2010. Before starting at ESHRE, she was employed as a pharmaceutical company product manager. As a research specialist Nathalie will assist the SIGs in the development of guidelines, and in that capacity will document existing guidelines, conduct stepwise literature search and summarise evidence, formulate and classify recommendations, record evidence gaps and update the literature search every two years for every guideline. Nathalie can be contacted at nathalie@eshre.euFocus on Reproduction January 2011 21