EFGCP - EGAN Patients’ Roadmap to Treatment Working Party
Why the joint EFGCP/EGAN Working Party?
The European Forum for Good Clinical Practice (EFGCP) and The European Genetic Alliances’ Network (EGAN) have created a common Working Party aiming to drive all elements in the clinical drug development process involving patients’ interests.
To strengthen patients’ possibilities to impact access to efficient and safe new treatments.
To support patient organisations’ contribution to the European aim of faster development of efficient and safe new treatments by providing information, know-how, skills and funding for patients and patient organizations
on clinical trials organization, risks and benefits
on areas of opportunities for patients’ influence on the clinical development process
on optimization of communication between patients, physicians, pharmaceutical industry and regulatory authorities on treatments’ benefits and risks
What are the Working Party activities?
Development of strategies and action plans to support the “Innovative Medicines Initiative” and other organisations’ initiatives to improve the efficiency of drug development
Information to patients on clinical trials to improve patients’ participation in clinical trials
Organisation of workshops and seminars on relevant topics
Support to EFGCP and EPPOSI workshops and conferences with topics, speakers and programme chairs.
Preparation of grant application to the 7th Research Framework Programme: TITLE and execution of the programme in case the grant would we provided
Preparation of books, handbooks, articles and brochures in collaboration with different support partners like:
“It is my life”
“Report on EFGCP/EGAN Workshop at the EFGCP Annual Conference 2006”
“Patients as partners in the drug development process”
“Book on Biobanking”
How is the Working Party organised?
Two Co-Chairs, one from EGAN and one from EFGCP, are chairing the Working Party consisting of representatives from interested organisations like different patient organisations, industry associations, pharmaceutical companies, physician organisations, academic institutions, health authorities, ethics committees, etc.
In face-to-face meetings, tele-conferences and per e-mail the different projects are discussed, designed and planned, priorities are set, roles and responsibilities distributed, the execution supervised and the final “product” discussed, agreed and disseminated. The representatives take the responsibility to discuss and comment the Working Party’s activities and products internally in their organisation.
Documents & Latest publications
|Presentation Brochure of the EGAN-EFGCP Working Party on Patients’ Roadmap to Treatment |
|Flyer – It’s MY life – A new revolution patient power by Simon Rozendaal|
|EGAN Glossary of Terms|
|EGAN FAQ on Clinical Trials|
|EURORDIS Charter for Clinical Trials in Rare Diseases, by Gábor Pogány, Eurordis, Hungary|
Contact the Chairpersons
Dr. Ingrid Klingmann & Mr. Ysbrand Poortman
Square de Meeûs
Rue de l'Industrie 4
Tel +32 2 732 87 83
Tel + 32 2 784 36 93 / +31 35 68 31 920 (direct)
Fax +32 2 784 30 66 / +31 35 60 27 440 (direct)
E-mail: firstname.lastname@example.org / email@example.com