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Similarities and differences between
rare cancers and rare diseases
Jan Geissler, EUPATI / CML Advocates Network
Kathy Oliver, International Brain Tumour Alliance
Ariane Weinman, EURORDIS
jan@cmladvocates.net
Rationale and action
 RD community and RC community are often regarded as
two different worlds.
 This is far from reality as the patients share the same
burden: the rarity and the many resultant complex and
often devastating challenges.
 Rare cancer patients often fall between the world of rare
diseases and the world of “big oncology”
 Kathy Oliver, Jan Geissler, supported by Ariane Weinman
(EURORDIS), mapped out the similarities and differences
between RC and RD
 Consultation of EURORDIS Policy Action Group, Rare
Cancers Europe, patient orgs from 21 countries. Published
21 November 2016
EURORDIS.org Website – download here:
About EURORDIS > Library > Publications
Similarities and differences between Rare Cancers and Rare Diseases
1. Concept of rarity
 Challenges
are very
similar
 Different
heterogeneity:
6000 RD vs.
198 RCs
 Incidence (RC)
vs. prevalence
(RD)
Somehow related
Very similar
Very different
2. Severity and course of disease
 Majority of RD and RC are life threatening
3. Pediatric population
 RD: over 50% affect children
 RC: incidence of pediatric cancers relatively low (2% of
RC)
Somehow related
Very similar
Very different
4. Public health challenge
 Similar, while awareness of both RC and RD has
dramatically increased, unmet needs are not high enough
on political agenda and list of priorities
5. Patient empowerment
 Both RC and RD share need of patients and families being
well informed and part of decision process
Somehow related
Very similar
Very different
6. Research
 Both RC and RD share need for increased research
efforts. Insufficient attention and interest from academic
research, pharma and funders
 Patient involvement in all aspects of research, regulatory,
ethics, HTA often essential
 RC take synergistic benefit from research on common
cancers (e.g. common pathways, oncology organisation)
 More difficult for RD to take advantage of research in other
fields: more heterogeneous
Somehow related
Very similar
Very different
7. Delay in accessing diagnosis
 RD patients and RC patients face the same challenges in
accessing a correct and timely diagnosis
 Huge discrepancies amongst EU MS between the
services offered in different centres
 Symptoms of RC often misunderstood, causing delay, but
once tumour is found, pathological diagnosis usually
obtained quickly
 RDs are often subject to significant delay regarding a
proper clinical diagnosis.
Somehow related
Very similar
Very different
8. Screening
 Screening in RC, i.e. screening of genome or screening
for targets for specific drugs, not used or routinely done
 It is widely accepted that 80% of RDs are of genetic origin.
Screening programmes are intended to identify the
inherited probability of an RD. Genetic testing policies
varies nationally, matter of advocacy. Mapping of the
human genome bring hope to RD patients and families.
Somehow related
Very similar
Very different
9. Prevention
 Prevention is not often applicable to RD and RC
 RCs are mainly acquired diseases, although primary
prevention may be applicable in certain RC. Primary
prevention e.g. avoidance of carcinogens and toxic
agents, healthy lifestyle; secondary prevention (population
screening, early detection) often not applicable.
 Some (not many) RDs can be detected through screening
/ genetic testing to confirm or not the presence of an
inherited disease. Newborn screening may allow care
protocol halting disease progress. However, not available
to most RD.
Somehow related
Very similar
Very different
10. Centers of Expertise
 RD and RC need to be treated in a specialised care unit,
as condition requires high level of expertise,
multidisciplinary care
 RC treated in oncology centers, infrastructure is in place,
even though specific RC capacity often lacking. Referral to
specialized onc center for specific RC.
 Heterogenity of RD makes finding healthcare specialist
difficult. Some MS have designated national centers of
expertise for RD.
 National Cancer Plans and National RD Plans often not
well bridged. NCPs often not cover RC well.
Somehow related
Very similar
Very different
11. European Reference Networks
 CBH directive & addendum introduces setup of ERNs
 Addendum defined 22 thematic RD groupings, including 1
on RC, 1 on hematology (incl malignant), 1 on pediatric
(ExPO-R-Net pilot)
 Implementation on RC very unclear (Rare Cancer Europe
suggested 12 families of RC as separate ERNs)
 ePAG structure established by EURORDIS to ensure
patient involvement in governance and implementation
(22 groupings, incl 1 for rare cancers, 1 for hematology)
Somehow related
Very similar
Very different
12. Training of medical doctors and
HCPs
 Patients living with RC and RD often report that
awareness and training of conditions should be increased
amongst HCP
 Courses for medical students on RC and RD
 Specialist training for nurses and other HCPs
 Virtual learning tools and educational resources
 Involve patient organisations systematically as experts on
rare conditions
Somehow related
Very similar
Very different
13. Access to treatments: Sharing of best
practices, clinical guidelines, protocols
 Sharing of best practices, clinical guidelines and protocols
for care and management of patients is crucial both for RD
and RC given rarity and scattered expertise
 RC might provide learning to RD community about sharing
protocols within and across MS
 Some RC have guidelines established (national and pan-
EU)
 RD guidelines developed in some countries in RD plans,
“RARE-Best Practices” facilitates sharing, evaluation,
development of best practice guidelines
Somehow related
Very similar
Very different
14. Healthcare and social costs
 Healthcare and social costs of RC and RD can be much
higher than for those with a “common” condition, because
treatments often very expensive and not always
reimbursed (e.g., off label use, therapy rejected by HTA
because it has been deemed to be not cost effective, etc).
 Higher social and economic burden on the patients and
families should be emphasized, quantified, addressed
Somehow related
Very similar
Very different
15. Orphan Drug Development
 Regulation 141/2000 on orphan medicinal products
applies to both RC and RD
 112 orphan medicinal products received EU market
authorization, about one third for RC
16. HTA/Value Assessment and Access
 EUCERD adopted recommendation on Clinical Added Value
of Orphan Medicinal Products Information Flow (CAVOMP)
in Sept 2012
 Mechanism of Coordinated Access to orphan medicinal
products (MoCA) initiative of EC assess added value of OMP
Somehow related
Very similar
Very different
17. Clinical Trials in Small Populations
 Clinical trials in small and vulnerable populations of RC
and RD face same major difficulties that are often
challenging to overcome for the sponsors and researchers
for legal, regulatory and financial reasons
 Clinical Trial designs need to be adapted
Somehow related
Very similar
Very different
18. Registries
 Registries have high relevance for both RD and RC.
 EC Joint Research Centre wants to harmonize info
systems
 Synergies between RD and RC registration should be
sought
 RC registries started long time ago and are well
structured, e.g. within population-based registries and
pediatric cancer registries
 Many RD do not have a registry, and amongst existing
registries, few are well structured and many lack funding.
Somehow related
Very similar
Very different
19. Biobanks
 Some universal cancer biobanks exist which are also used
for RC biobanking, as well as specific RC biobanks
 EuroBioBank is only network dedicated specifically to RD
research in Europe (25 members, 21 biobaks, 9 countries)
 BBMRI-ERIC aims at establishing, operating, and
developing a pan-European distributed research
infrastructure of biobanks and biomolecular resources.
Somehow related
Very similar
Very different
20. Psychosocial aid
 Due to rarity, patients living with a rare disease or a rare
cancer face the difficulty of finding social services and
psychological support adapted to their needs.
 For RC, discipline of psycho-oncology (and e.g. IPOS) has
been established
 Given heterogeneity of RD, social support and
psychological support vary greatly according to type of
disease, national healthcare and social system.
 EURORDIS has led a work package within EUCERD Joint
Action (2012-2015) on ‘Specialised Social Services and
Integration of RD into Social Policies and Services’.
 Patient organisations major players in providing support,
but lack recognition
Somehow related
Very similar
Very different
21. (Long-term) Follow-up of rare disease
survivors and childhood cancer survivors
 In RC, important to address long-term toxicity, cancer
treatment consequences and quality of life – all aspects of
cancer survivorship
 Due to heterogenity of RD, situation faced by the patient
can be very different from one disease to another, which
makes it very difficult to provide an overall assessment.
Somehow related
Very similar
Very different
Questions?
Jan Geissler jan@cmladvocates.net
Kathy Oliver kathy@theibta.org
Ariane Weinman ariane.weinman@eurordis.org

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Similarities and differences between Rare Cancers and Rare Diseases

  • 1. Similarities and differences between rare cancers and rare diseases Jan Geissler, EUPATI / CML Advocates Network Kathy Oliver, International Brain Tumour Alliance Ariane Weinman, EURORDIS jan@cmladvocates.net
  • 2. Rationale and action  RD community and RC community are often regarded as two different worlds.  This is far from reality as the patients share the same burden: the rarity and the many resultant complex and often devastating challenges.  Rare cancer patients often fall between the world of rare diseases and the world of “big oncology”  Kathy Oliver, Jan Geissler, supported by Ariane Weinman (EURORDIS), mapped out the similarities and differences between RC and RD  Consultation of EURORDIS Policy Action Group, Rare Cancers Europe, patient orgs from 21 countries. Published 21 November 2016
  • 3. EURORDIS.org Website – download here: About EURORDIS > Library > Publications
  • 5. 1. Concept of rarity  Challenges are very similar  Different heterogeneity: 6000 RD vs. 198 RCs  Incidence (RC) vs. prevalence (RD) Somehow related Very similar Very different
  • 6. 2. Severity and course of disease  Majority of RD and RC are life threatening 3. Pediatric population  RD: over 50% affect children  RC: incidence of pediatric cancers relatively low (2% of RC) Somehow related Very similar Very different
  • 7. 4. Public health challenge  Similar, while awareness of both RC and RD has dramatically increased, unmet needs are not high enough on political agenda and list of priorities 5. Patient empowerment  Both RC and RD share need of patients and families being well informed and part of decision process Somehow related Very similar Very different
  • 8. 6. Research  Both RC and RD share need for increased research efforts. Insufficient attention and interest from academic research, pharma and funders  Patient involvement in all aspects of research, regulatory, ethics, HTA often essential  RC take synergistic benefit from research on common cancers (e.g. common pathways, oncology organisation)  More difficult for RD to take advantage of research in other fields: more heterogeneous Somehow related Very similar Very different
  • 9. 7. Delay in accessing diagnosis  RD patients and RC patients face the same challenges in accessing a correct and timely diagnosis  Huge discrepancies amongst EU MS between the services offered in different centres  Symptoms of RC often misunderstood, causing delay, but once tumour is found, pathological diagnosis usually obtained quickly  RDs are often subject to significant delay regarding a proper clinical diagnosis. Somehow related Very similar Very different
  • 10. 8. Screening  Screening in RC, i.e. screening of genome or screening for targets for specific drugs, not used or routinely done  It is widely accepted that 80% of RDs are of genetic origin. Screening programmes are intended to identify the inherited probability of an RD. Genetic testing policies varies nationally, matter of advocacy. Mapping of the human genome bring hope to RD patients and families. Somehow related Very similar Very different
  • 11. 9. Prevention  Prevention is not often applicable to RD and RC  RCs are mainly acquired diseases, although primary prevention may be applicable in certain RC. Primary prevention e.g. avoidance of carcinogens and toxic agents, healthy lifestyle; secondary prevention (population screening, early detection) often not applicable.  Some (not many) RDs can be detected through screening / genetic testing to confirm or not the presence of an inherited disease. Newborn screening may allow care protocol halting disease progress. However, not available to most RD. Somehow related Very similar Very different
  • 12. 10. Centers of Expertise  RD and RC need to be treated in a specialised care unit, as condition requires high level of expertise, multidisciplinary care  RC treated in oncology centers, infrastructure is in place, even though specific RC capacity often lacking. Referral to specialized onc center for specific RC.  Heterogenity of RD makes finding healthcare specialist difficult. Some MS have designated national centers of expertise for RD.  National Cancer Plans and National RD Plans often not well bridged. NCPs often not cover RC well. Somehow related Very similar Very different
  • 13. 11. European Reference Networks  CBH directive & addendum introduces setup of ERNs  Addendum defined 22 thematic RD groupings, including 1 on RC, 1 on hematology (incl malignant), 1 on pediatric (ExPO-R-Net pilot)  Implementation on RC very unclear (Rare Cancer Europe suggested 12 families of RC as separate ERNs)  ePAG structure established by EURORDIS to ensure patient involvement in governance and implementation (22 groupings, incl 1 for rare cancers, 1 for hematology) Somehow related Very similar Very different
  • 14. 12. Training of medical doctors and HCPs  Patients living with RC and RD often report that awareness and training of conditions should be increased amongst HCP  Courses for medical students on RC and RD  Specialist training for nurses and other HCPs  Virtual learning tools and educational resources  Involve patient organisations systematically as experts on rare conditions Somehow related Very similar Very different
  • 15. 13. Access to treatments: Sharing of best practices, clinical guidelines, protocols  Sharing of best practices, clinical guidelines and protocols for care and management of patients is crucial both for RD and RC given rarity and scattered expertise  RC might provide learning to RD community about sharing protocols within and across MS  Some RC have guidelines established (national and pan- EU)  RD guidelines developed in some countries in RD plans, “RARE-Best Practices” facilitates sharing, evaluation, development of best practice guidelines Somehow related Very similar Very different
  • 16. 14. Healthcare and social costs  Healthcare and social costs of RC and RD can be much higher than for those with a “common” condition, because treatments often very expensive and not always reimbursed (e.g., off label use, therapy rejected by HTA because it has been deemed to be not cost effective, etc).  Higher social and economic burden on the patients and families should be emphasized, quantified, addressed Somehow related Very similar Very different
  • 17. 15. Orphan Drug Development  Regulation 141/2000 on orphan medicinal products applies to both RC and RD  112 orphan medicinal products received EU market authorization, about one third for RC 16. HTA/Value Assessment and Access  EUCERD adopted recommendation on Clinical Added Value of Orphan Medicinal Products Information Flow (CAVOMP) in Sept 2012  Mechanism of Coordinated Access to orphan medicinal products (MoCA) initiative of EC assess added value of OMP Somehow related Very similar Very different
  • 18. 17. Clinical Trials in Small Populations  Clinical trials in small and vulnerable populations of RC and RD face same major difficulties that are often challenging to overcome for the sponsors and researchers for legal, regulatory and financial reasons  Clinical Trial designs need to be adapted Somehow related Very similar Very different
  • 19. 18. Registries  Registries have high relevance for both RD and RC.  EC Joint Research Centre wants to harmonize info systems  Synergies between RD and RC registration should be sought  RC registries started long time ago and are well structured, e.g. within population-based registries and pediatric cancer registries  Many RD do not have a registry, and amongst existing registries, few are well structured and many lack funding. Somehow related Very similar Very different
  • 20. 19. Biobanks  Some universal cancer biobanks exist which are also used for RC biobanking, as well as specific RC biobanks  EuroBioBank is only network dedicated specifically to RD research in Europe (25 members, 21 biobaks, 9 countries)  BBMRI-ERIC aims at establishing, operating, and developing a pan-European distributed research infrastructure of biobanks and biomolecular resources. Somehow related Very similar Very different
  • 21. 20. Psychosocial aid  Due to rarity, patients living with a rare disease or a rare cancer face the difficulty of finding social services and psychological support adapted to their needs.  For RC, discipline of psycho-oncology (and e.g. IPOS) has been established  Given heterogeneity of RD, social support and psychological support vary greatly according to type of disease, national healthcare and social system.  EURORDIS has led a work package within EUCERD Joint Action (2012-2015) on ‘Specialised Social Services and Integration of RD into Social Policies and Services’.  Patient organisations major players in providing support, but lack recognition Somehow related Very similar Very different
  • 22. 21. (Long-term) Follow-up of rare disease survivors and childhood cancer survivors  In RC, important to address long-term toxicity, cancer treatment consequences and quality of life – all aspects of cancer survivorship  Due to heterogenity of RD, situation faced by the patient can be very different from one disease to another, which makes it very difficult to provide an overall assessment. Somehow related Very similar Very different
  • 23. Questions? Jan Geissler jan@cmladvocates.net Kathy Oliver kathy@theibta.org Ariane Weinman ariane.weinman@eurordis.org