Um sein eigenes Leben zu retten, entwickelte ein Medizinstudent einen neuen Ansatz zur Wirkstoffforschung einer seltenen Krankheit. Jetzt rettet David Fajgenbaum andere.
Mary Zuccato; Dustin Shilling; David C. Fajgenbaum
“The Collaborative Network Approach: a model for advancing patient-centric research for Castleman disease and other rare diseases”
Emerg Top Life Sci (2019) 3 (1): 97-105.
https://doi.org/10.1042/ETLS20180178
Numerous rare diseases with many people affected
Rare diseases are only rare when taken in isolation; together there are very many rare diseases indeed. A disease is deemed to be rare if it affects no more than five out of every 10,000 people. So far between 6,000 and 8,000 rare diseases have been described worldwide.
The rare nature of individual conditions makes it more difficult to research, diagnose and provide medical care. Only a small number of people suffer from each of the 6,000 to 8,000 rare diseases known. Not only are individual diseases rare, but there is little specialist knowledge of them. If there is to be an improvement in care, expertise will have to be bundled and information will have to be shared more effectively. Teamwork is essential, as is networking between all the actors involved, including patients, care providers, social insurers, researchers, and many more. Diagnosing these conditions correctly and rapidly and providing those affected with appropriate care requires cooperation across Switzerland and beyond national boundaries.
Source: Federal Office of Public Health FOPH, Switzerland 2016
There are 7000 rare diseases affecting 30 000 000 individuals in the U.S.A. 95% of these rare diseases do not have a single Food and Drug Administration-approved therapy.
The Castleman Disease Collaborative Network (CDCN), founded in 2012, spearheaded a novel strategy for advancing biomedical research, the ‘Collaborative Network Approach’.
The Castleman Disease Collaborative Network is dedicated to investing in Caslteman disease research and providing support to patients and their loved ones.”
At its heart, the Collaborative Network Approach leverages and integrates the entire community of stakeholders — patients, physicians and researchers — to identify and prioritize high-impact research questions.
CDCN’s Collaborative Network Approach – 8 Steps
- Building a Community
- Crowdsourcing and Prioritizing Research Studies
- Identifying Top Researchers
- Fundraising
- Procuring Samples and Enrolling Patients
- Executing Studies
- Identifying Treatments
- Disseminating Knowledge
Source: The Castleman Disease Collaborative CDCN Network 2019
https://cdcn.org/
Neues Buch:
Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir (Englisch)
Gebundenes Buch – September 10, 2019 von David Fajgenbaum