The document summarizes the results of a 2010 survey on patient organizations and their role in and priorities for research. The survey found that:
1) Patient organizations play an important role in research through both financial and non-financial support, though their budgets and abilities vary significantly.
2) While financial support for research comes from 37% of organizations, most provide non-financial assistance like helping connect researchers and patients.
3) Organizations see more advances in basic research and diagnosis but less in areas like human/social sciences and assistive technologies.
4) When prioritizing public research funds, organizations want emphasis on therapeutics, diagnosis and epidemiology/natural history of diseases.
This document discusses global trends in scholarly publishing based on data from Thomson Reuters. It finds that submissions are growing rapidly in countries like China, India, and Iran. By 2013, it projects that China and India will be the top two submitting countries. However, acceptance rates are lower in these fast-growing countries. This may present challenges for peer review systems. It also finds increasing regionalization and internationalization of scientific research. Thomson Reuters aims to expand the international reach and coverage of its tools and services.
This document summarizes the ECRF/CRF Survey from 2012. It provides information on the participating countries and organizations in the survey. It describes the purpose of the survey as improving over time to become more global and analytical. It outlines the contents to be included in the 2012 report, such as legal and institutional settings, processing time, e-services, costs and fees, and business dynamics. It concludes with remarks about inviting more participants to the 2013 survey and including new questions.
Philippe Amouyel slides - Washington DC, Nov. 2012jpndresearch
The document summarizes the Joint Programming Initiative on Neurodegenerative Diseases (JPND). It discusses (1) the increasing societal and economic burden of neurodegenerative diseases like Alzheimer's, (2) JPND's goals of developing new treatments and improving care approaches, and (3) JPND's governance structure and initial research investments exceeding 100 million Euros from 2011-2014 across multiple countries.
Li et-al -impact-of-point-of-sale-anti-smoking-warnings1Alexander Li
1) The document reports on a study examining the impact of point-of-sale anti-smoking warnings on smokers' quit intentions and attempts.
2) The study analyzed longitudinal data from surveys of adult smokers in China, Australia, Canada, the UK and US. It found that in Australia, smokers exposed to POS warnings were more likely to report quit intentions and attempts compared to unexposed smokers.
3) Preliminary results from China also suggested smokers exposed to POS warnings were more likely to report quit intentions at follow up compared to unexposed smokers. However, the study found no significant associations between POS warning exposure and quitting in Canada, UK and US.
This document contains prayers and devotions addressed to Mary, the mother of Jesus. It includes the Hail Mary prayer, prayers asking for Mary's intercession and help, hymns of praise and devotion to Mary, prayers for the intentions of the Holy Father, prayers before the Blessed Sacrament, and blessings. The overall purpose is to venerate Mary and seek her protection and guidance through prayer and worship.
This document discusses a shared goal between MyOpenArchive and Scribd to make the information in documents accessible to everyone by unlocking information and helping users. It provides a demo and thanks the reader.
This document discusses global trends in scholarly publishing based on data from Thomson Reuters. It finds that submissions are growing rapidly in countries like China, India, and Iran. By 2013, it projects that China and India will be the top two submitting countries. However, acceptance rates are lower in these fast-growing countries. This may present challenges for peer review systems. It also finds increasing regionalization and internationalization of scientific research. Thomson Reuters aims to expand the international reach and coverage of its tools and services.
This document summarizes the ECRF/CRF Survey from 2012. It provides information on the participating countries and organizations in the survey. It describes the purpose of the survey as improving over time to become more global and analytical. It outlines the contents to be included in the 2012 report, such as legal and institutional settings, processing time, e-services, costs and fees, and business dynamics. It concludes with remarks about inviting more participants to the 2013 survey and including new questions.
Philippe Amouyel slides - Washington DC, Nov. 2012jpndresearch
The document summarizes the Joint Programming Initiative on Neurodegenerative Diseases (JPND). It discusses (1) the increasing societal and economic burden of neurodegenerative diseases like Alzheimer's, (2) JPND's goals of developing new treatments and improving care approaches, and (3) JPND's governance structure and initial research investments exceeding 100 million Euros from 2011-2014 across multiple countries.
Li et-al -impact-of-point-of-sale-anti-smoking-warnings1Alexander Li
1) The document reports on a study examining the impact of point-of-sale anti-smoking warnings on smokers' quit intentions and attempts.
2) The study analyzed longitudinal data from surveys of adult smokers in China, Australia, Canada, the UK and US. It found that in Australia, smokers exposed to POS warnings were more likely to report quit intentions and attempts compared to unexposed smokers.
3) Preliminary results from China also suggested smokers exposed to POS warnings were more likely to report quit intentions at follow up compared to unexposed smokers. However, the study found no significant associations between POS warning exposure and quitting in Canada, UK and US.
This document contains prayers and devotions addressed to Mary, the mother of Jesus. It includes the Hail Mary prayer, prayers asking for Mary's intercession and help, hymns of praise and devotion to Mary, prayers for the intentions of the Holy Father, prayers before the Blessed Sacrament, and blessings. The overall purpose is to venerate Mary and seek her protection and guidance through prayer and worship.
This document discusses a shared goal between MyOpenArchive and Scribd to make the information in documents accessible to everyone by unlocking information and helping users. It provides a demo and thanks the reader.
The document summarizes the results of a survey conducted with 309 patient organizations from 29 European countries about their role in research and priorities for the future. It finds that while 37% of organizations fund research, most provide non-financial support through activities like facilitating collaboration between researchers, patients, and clinicians. The organizations support a wide range of research areas and have played a role in building research communities, though their budgets are limited. Understanding patient organizations' expertise and how they contribute knowledge to health policymaking was a goal of the survey.
The document summarizes the results of a survey conducted with 309 patient organizations from 29 European countries about their role in research and priorities for the future. It finds that while only 37% of organizations fund research directly, most support research in other ways such as linking patients and researchers, providing trial information, and helping design studies. Organizations see their biggest contributions as creating collaborations between stakeholders and highlighting patient needs. However, they also identified obstacles like limited budgets and a need for more major advances in basic, diagnostic and other research areas.
'Investigar, educar, dialogar. Las lecciones que aprendimos de José Mariano Gago (1948-2015)'. Con este título celebramos los días 1 y 2 de junio de 2016 en la Fundación Ramón Areces un simposio para homenajear la trayectoria de quien fue ministro de Ciencia y Tecnología (1995-2002) y ministro de Ciencia, Tecnología y Educación Superior (2005-2011) de Portugal. Gago desempeñó una labor crucial en el diseño de los planes de desarrollo de la ciencia, la tecnología y la innovación, no solo en su país sino en toda Europa.
The life science industry in Israel has experienced significant growth over the past decade. The number of life science companies has increased from around 200 prior to 2000 to over 1200 in 2011. Around 40% of all life science companies were established in the last 6 years, with 70-80 new companies being founded each year. The largest sectors are medical devices (62%) and biotechnology (12%), while over 30% of companies have reached the revenue stage. Exports have also grown substantially, increasing 26% from 2010 to 2011 to a total of $5.388 billion. Key export destinations include the US, EU, China, and Japan. Israel also has a strong network of incubators and technology transfer offices that support the development of new
The document discusses a national project in Japan using NFC in smartphones to transform home healthcare. It outlines the agenda which includes perspectives on NFC use in Japan, technology presentations, and a panel discussion. It then provides details on the aging population crisis in Japan's healthcare system and the need to reform from hospital-based care to home telehealthcare. The national project at Japan's Ministry of Internal Affairs and Communications aims to use NFC in smartphones to enable real-time sharing of patient health data between homes, clinics, and hospitals to improve quality of care through remote monitoring.
Importance of Ethics, Bio-security and Good Practices for Better Scientific C...UNESCO Venice Office
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The document discusses a program on veterinary business topics including the economic performance of equine practices in Europe, ownership of veterinary practices, strategy, customer retention, and staff happiness. It then provides information on Oculus Insights, a global business education company that offers multi-day and one-day veterinary business programs. The executive leadership team and backgrounds of the speakers are listed. Finally, an overview is given of Joop Loomans and one of his past presentations on the past, present and prospects of the equine veterinary profession.
The Institut Pasteur de Tunis (IPT) is a biomedical research institution dedicated to public health. It was founded in 1893 and has made major discoveries in diseases such as typhus, toxoplasmosis, and leishmaniasis. The IPT conducts research, vaccine and serum production, clinical analysis, training, and technology transfer. It has over 470 employees including 123 scientists. The IPT is part of the international Pasteur network and collaborates with national and international partners on research projects and training programs.
This document discusses structuring gender equality plans (GEPs) at universities of science and technology. It recommends (1) focusing on decision-making processes and bodies by monitoring gender representation and introducing quotas; (2) focusing on recruitment and career development of women by collecting data, training committees to address bias, and dealing with resistance; and (3) focusing on the gender dimension in teaching and research by including gender content and supporting staff. The goal is to create a climate where gender equality is standard practice and overcome resistance by reasonably using resources to do the right thing.
The document describes the Toscana Life Sciences Foundation, which was established in Siena, Italy to support life sciences research and foster technology and industry development in the Tuscan region. The Foundation operates a bio-incubator facility that provides lab and office space, equipment, services and consulting to startup companies. The bio-incubator has selected and supported several early-stage life sciences companies conducting research in areas such as oncology, neuroscience and infectious diseases.
Respina lecture tb philippine experience 1 jenifer ann mendozapoe_ku
The document summarizes the current state of tuberculosis (TB) control efforts in the Philippines. It outlines that TB prevalence and mortality rates have declined significantly from 1990 to 2015. However, challenges remain in fully detecting and treating all TB cases, including multi-drug resistant TB and TB occurring in high-risk populations. The Philippine Coalition Against TB (PhilCAT) plays an important role in supporting TB control through activities like education and training, advocacy, and involvement in program planning and policymaking.
The document discusses EU funding opportunities for health research and innovation under Horizon 2020. Horizon 2020 is the EU's 2014-2020 program for research and innovation, with €80 billion allocated. It focuses on three priorities: excellent science, industrial leadership, and societal challenges. In the area of health, challenges include aging populations, disease burden, and pressure on healthcare systems. The goals are to translate science into benefits, improve outcomes, support healthcare sectors, and promote healthy aging. The document provides details on past funding amounts under FP7 and lists several international consortia supported. It outlines the structure and goals of the International Rare Diseases Research Consortium to develop 200 new therapies and means to diagnose rare diseases by 2020.
2nd European Conference on Clinical ResearchMarket iT
The document provides information on the organizers, program committee, and agenda for the 2nd European Conference on Clinical Research being held from February 2-4, 2015 in Paris, France. The pre-conference on February 2nd will focus on how clinical procurement can provide strategic value beyond cost reductions. The main conference on February 3rd-4th will involve presentations and debates on key issues in clinical research regulation, new technologies, risk management, and the patient's role. Topics will include the impacts and challenges of the new EU Clinical Trials Regulation and new operational practices in clinical trials.
This document proposes strategies for Chart to expand into the Chinese respiratory healthcare market by targeting concentrated oxygen products. It identifies opportunities in screening and diagnosing China's large undiagnosed COPD population. The plan focuses on free spirometry testing in high-traffic areas of cities with high COPD prevalence. Adding air purifiers to products and hiring sales representatives could increase awareness, diagnosis, and sales. The screening strategy could identify 28,800 potential COPD patients with a $154,000 investment.
The document discusses the aging population challenge facing China and opportunities for French companies. It notes that China has the largest aging population in the world, with over 400 million people expected to be over 60 years old by 2050, creating huge needs for elderly care services, medical treatment, and hospitality. The Colisée Group joint venture with China Merchants aims to address these needs by bringing international expertise in geriatric care, facilities, and services to China.
EuroBioForum 2013 - Day 2 | Frank MolinaEuroBioForum
EuroBioForum 2013 2nd Annual Conference
27-28 May 2013 - Hilton Munich City, Munich, Germany
http://www.eurobioforum.eu/2013
=======================================
# REGIONAL PERSPECTIVES #
EuroBioMed, France:
Private-public collaborations to boost open innovation
Dr Franck Molina
President of EDCA, Chair of diagnosis group of Eurobiomed
Director of Sysdiag
=======================================
http://www.eurobioforum.eu
This document provides guidance on starting and maintaining an effective Twitter account for a rare disease. It recommends choosing a memorable username and hashtag, filling out your profile, following related accounts and hashtags, engaging in conversations rather than just sharing links, and using tools like HootSuite to schedule posts and monitor discussions. The key is to start listening, learn from others in your rare disease community, and sustain activity over time through strategic planning and involvement of a team.
During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the project.
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Results of Survey on the role of Patient Groups in Research and their priorities for the future
1. Results of a survey on
the role of Patient Groups in Research
and their priorities for the future
Florence Paterson
Centre de sociologie de l’innovation,
UMR CNRS 7185 - Mines-ParisTech
Paris, France
2. 2010 Survey on Patient
Organisations and Research
results from a joint collaboration between
Fabrizia Bignami
EURORDIS Paloma Tejada
François Faurisson
Julia Fitzgerald
and the
Anja Helm
Madeleine Akrich
Centre de sociologie Vololona Rabeharisoa
de l’innovation Florence Paterson
Frédéric Vergnaud
Michel Callon
3. A few words on the works of the Centre de
sociologie de l’innovation
Contribution to Science and Technology Studies
understanding the rise of “technical democracy”
Forms of participation of civil society organizations in
scientific and technical activities and debates
impact on the modes of production of knowledge
and on scientific practices
upshot on the emergence and the increase of collective
mobilizations around science issues
4. Research questions
Lay knowledge and expertise
POs’ expertise: to what extend is the claim to hold an expertise
based on the mobilization of experiential knowledge coupled with the
acquisition of certified knowledge?
In what form do patient’s collectives mobilize experiential knowledge
& certified knowledge: alignment, opposition or conjunction?
The role of knowledge in the governance of medical
and health policies, and the contribution of patient
organizations
Mechanisms through which POs voice their concerns in health-
policy making
The ways POs promote their expertise capacity in health policy-
making
5. Aims of the Survey
To evaluate POs’ support to research: in what ways
and to what extent
To learn about POs’ experience of collaboration with
researchers
To collect POs’ opinion on priorities and obstacles for
rare disease research
6. Survey population
Questionnaire sent
to 772 POs
309 responses from
29 European countries
(178 member + 131 non
member POs)
= 40% response rate
7. General characteristics
of participating POs
Age of the POs
Financial resources
Diseases and clinical domains concerned
Existence of internal Scientific Committees
8. Rare diseases POs: newly created
organisations
Number of years active
37% exist for 10 to 15 years
22% exist for less than 5
years
9. Membership
2/3 of (non umbrella) POs
have less than 500 members
Number of members
Building its membership:
100 a long-term process
80 •44% of the POs
60 created before 1970
40 33% have more than 3000
21% members.
20 15% 13% 13%
6%
0 •31% of the POs
# POs created between 2000
50
9
0
9
9
9
-9
49
99
00
99
<
50
-2
>3
0-
0-
and 2009 have 50 to
10
50
00
10
150 members.
10. High diversity in POs’ annual budgets
25 000 €
3 000 € 100 000 €
0€
¼ of POs have less ¼ of POs have more
than 3 000 € than 100 000 €
10% less than 300 €
5% more than 1 200 000 €
6% no budget
11. Diseases and clinical domains
110 diseases from various clinical domains
(1.3 million patients specifically represented)
Multisystemic Dermatology
Neurology n=30
n=38 n=23
Musculoskeletal Ophthalmology Metabolic
n=22 n=12 n=13
Neuromuscular Oncology Cardiovascular
n=27 n=12 n=14
Haematology Others Umbrella
n=10 n=59 n=15
15 Umbrella organisations from 10 countries
(20 million patients represented)
12. Integration of external scientific competences
within the POs structure
56% of the POs have a
Danemark 22
Scientific Committee (174
Sweden 36 out of 309)
NL 44 A very common device
Spain 46 within French POs
Belgium 47 Greater proportion among
older POs: 80% of the POs
Ireland 50
created before 1980 vs.
UK 59 60% after 1980
Italy 60
45% of the Scientific
Germany 69 Committees contribute to
the allocation of financial
France 90
resources for research
0 20 40 60 80 100
13. POs support to Research
37 % of POs fund research
but
POs’ non-financial support to research,
less visible, provides specific resources
14. Areas of research funded
81 % Basic research
57% Therapeutics
56% Diagnosis
54% Epidemiology / Natural history of the disease
46% Human and Social Science
24% Assistance technologies / Daily life
19% Research infrastructures
15. Types of financial support
(37% of the Pos)
77% Initiating and financing a specific research project
75% Co-financing the operating budget of a specific research project
54% Financing the acquisition of a specific research equipment (centrifuge,
computer, etc)
47% Financing a fellowship for a young researcher
39% Co-financing meetings of researchers / clinicians
30% Co-financing training of researchers / clinicians
16. Financial support to research is
linked to the POs’ budgets and age
% of POs % of POs
POs’ annual total
funding Date of creation funding
budget
research research
Budget > 300.000 € 81% Before 1970 70%
Budget between Between 1970 - 1979 61%
50% - 56%
30.000 to 300.000 €
Between 1980-1989 47%
Budget between
32% - 33%
5000 to 30.000 €
Between 1990 -1999 35%
Budget < 5000 € 11% -14% Between 2000-2009 30%
17. POs’ support to research
Non-financial support to research
76% Actions aiming at creating links between patients, researchers and physicians
57% Helping to identify patients to participate in clinical trials
49% Providing information and counseling for potential participants in clinical trials
48% Defining research projects by highlighting patients' needs and expectations
45% Collaboration in clinical trials design
30% Participation in scientific committees within institutions
28% Launching campaigns for the collection of biological samples from patients
Financial support to research: 37%
19. POs’ experience of collaboration
with researchers
Relationship with research
15 12 34 19 5
teams (Close or distant)
NA
Quality of research results ++
22 13 38 71
(Encouraging or not) +
-
Information on research --
15 16 33 13 7
results (Satisfying or poor)
0 20 40 60 80 100
21. Advances observed by the POs in
different research areas (5 last years)
Major vs. important advances
Basic research 15% vs. 27%
Diagnosis 13% vs. 24%
Minor advances
Human and social sciences 40%
Assistive technologies 38%
Epidemiology 38%
22. Degree of priority that should be given when
allocating public funds & research areas
Therapeutics 49
Diagnosis 40
Basic research 35 Strong priority
44 Absolute priority
Epidem iology
Hum an and social sciences 43
Assistive technologies 36
Infrastructures 36
0 10 20 30 40 50 60
23. Obstacles to the advance of
research
Lack of recognition of your disease 21 19 13 11
Lack of multidisciplinary research 18 25 15 12
Lack of coordination between specialists major
23 28 12 10
(researchers and clinicians) important
minor
Difficulties to identify patients 21 32 17 12
none
Low number of clinicians specialised in your
39 29 9 5
disease/s
Low number of researchers working on
37 30 9 7
your disease/s
0% 20% 40% 60% 80% 100%
24. Conclusion
POs’ efforts for creating collectives of researchers, clinicians &
POs around the specific diseases they are concerned with
appears as being for them a priority action in the support /
development of research.
POs’ support to research concern a large range of research
areas (basic, therapeutic, social and human sciences…).
Although financial support to research is the more visible form
of support, a large part of their involvement consist in activities
providing non-financial support to research.
POs have limited budgets, but rare disease research benefits
from their specific resources: contacts and trust between
members & their expertise on the diseases they are concerned
with.