3. EIT
Innovation by ideas
Rare Cancer KIC
An innovative community of partners that
deliver sustainable platforms and services to
resolve the inequalities of care that exist
between patients with rare cancers.
4. Rare Cancers in Europe
Families of rare cancer Rate
(per 100,000)
Estimated
new cases in 2014
in the EU
Pediatric cancers
(all)
0.34 1,737
Haematological rare malignancies
(acute myeloid leukemia, myeloproliferative neoplasms,
myelodisplastic and myeloproliferative neoplasms, histiocytic and
dendritic cell neoplasms)
9.64 48,930
Head and neck cancers
(cancers of nasal cavity and sinuses, nasopharynx, hypopharynx,
larynx, salivary glands, oropharynx, oral cavity and lip, eye, middle
ear)
16.37 83,058
Central nervous system tumours
(glial tumours, medulloblastoma, malignant meningioma)
7.56 38,347
Sarcomas
(soft tissue sarcomas, bone sarcomas, gastrointestinal stromal
tumours)
5.86 29,760
Thoracic rare cancers
(tumours of trachea, thymus, malignant mesothelioma)
2.43 12,347
Male genital and urogenital rare cancers
(tumours of testis, penis, renal pelvis, ureter, urethra, and
extragonadal germ cell tumours)
5.79 29,392
Female genital rare cancers
(tumours of vulva and vagina, non epithelial tumours of ovary,
trophoblastic tumours of the placenta)
2.25 11,427
Neuroendocrine tumours 3.51 17,796
Tumours of the endocrine organs
(cancers of thyroid, parathyroid, adrenal cortex, pituitary gland)
5.35 27,155
Digestive rare cancers
(tumours of small intestine, anal canal, gallbladder and extrahepatic
biliary duct)
6.38 32,350
Rare skin cancers
(melanoma of mucosae, melanoma of uvea, adnexal carcinoma of
skin, Kaposi’s sarcoma)
1.40 7,086
Incidence 108/ 100,000
541,000 new diagnosis per year
22% of all cancer diagnosis
Prevalence 4.3 Million
24% of total
Overall survival 47% compared to 69%
for common cancers
5. EIT Rare Cancer KIC
5
Creates platform and services – building on the EIT
community, utilizing technology and power of medical and
social communities – for patients with rare cancers, with
medical professionals around Europe and the globe.
There is a need to address the challenges:
1. Societal Challenge: Addresses the fragmented and un-coordinated market that currently
disadvantages citizens with rare cancer, from diagnosis, access to information, treatments,
clinical trials and survivorship support across Europe.
2. Market Challenge: EIT Health driven expansion of the total cancer market by 20% in next 5 years
in order to meet created demand for diagnostics and treatment for rare cancers (Estimated
European market value €5Billion).
3. Sustainability: EIT health innovation community based education, training and communication
for the public and professionals to sustain 1 and 2.
7. SWOT – RC KIC
7
Weaknesses
• Poor data systems interoperability, lack of standards
(addressed using SPECTA)
• Lack of coonectivity between service providers &
individuals/companies who subscribe to the Cloud service
• Not global yet
• Compliance (EMA, FDA for example..)
• Lack of investment (grow community of rare cancer,
pharma and SME partners
Strengths
• Combined leadership and credibility of a world leading
company (GE), University (Oxford) and clinical research
partner (EORTC).
• Global network with flexible, scalable services with quick
to market access
• Technical excellence in development and delivery of GE
Case Exchange
• Co-creation of business model focused on patient care
with new partners (high level of control)
• Use of EORTC SPECTA data portal
Opportunities
• Addresses the fragmented & un-coordinated market that
currently disadvantages patients with rare cancer, from
diagnosis, access to information, treatments & clinical trials
across Europe
• Expansion of the total cancer market by 20% in next 5 years
(large potential for improved patient care, reduce medical
errors & rationalize cost)
• Innovation community based education, training and
communication for the public and professionals
• SME 's internationalization opportunities & starting new
startups to expand services
Threats
• Privacy breaches, identity theft
• Technical glitches
• Service/ care must be taken to adhere to all applicable
law / guidelines & regulations on data protection /
patient privacy
8. May 2015 Jul ‘15 Sep ‘15 Dec ‘15 Mar ‘16 Jun ‘16
PFH2.0/ Cloud AV
Kickoff
PFH15. 3 PFH15. 4 PFH15. 5 PFH16.1 PFH16.2
RSNA Chicago
Milestone
510(k)
Submission
Commercial
Release (Beta)
We are Here
✓ ✓
TRL8 TRL9TRL7TRL5
EIT- RC KIC
Consortia Confidential
GE Healthcare
11. Establishing New Partners
11
1. Clinical and Academic Rare Cancer Universities and Centre.
e.g. Karolinska/LUMC/UPMC/IGR/Berlin/Munster/Lyon/Milan/Vienna/Barcelona
EORTC recognised reference centres for Rare cancers.
2. Global Companies.
e.g. Philips, Pfizer, Roche, MSD, AZ, Novartis, Sanofi, ACME.
3. Small medium sized companies.
e.g.14M Genomics, Oxford Gene Technology, OnconPass (Hu), ServiceXS,
eCancer
4. Regulatory, payers and patients
e.g. RareCancersEurope, EMA, NICE, ESMO.
12. Patient with rare cancer
Consent for
SPECTArar
e
EORTC
Molecular
pathology
Diagnostic
s
Biobank
Innovation
and
Discovery
research
Personalis
ed
medicine
proof of
concept
Clinical
outcome
Orphan
licence
Rare cancer
Diagnostic
technologies
Rare cancer
Drug
development
trials
Rare cancer Professional
team
Rare cancer
payers and
value
Virtual Expert
tumour board
GEHC
Innovation
and
Discovery
research
Innovation
and
Discovery
research
15. Rare Cancer Knowledge Innovation Community
Leadership
Prof Bass Hassan, University of Oxford [Co-ordinator]
Viktoria Katona, GE Healthcare (Budapest) [MISSon Rare Cancer]
Andrea Suranyi, GE Healthcare (Budapest [GE Case Exchange]
Stephane Lejeune, EORTC, Brussels [SPECTARare]
15
Come and join us
