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BBMRI recognizes that the development of a research infrastructure that can facilitate the use of patient data, collected from biobanks of various types all around Europe requires confidence that the confidentiality and safety of patient data will be protected. In response to specific feedback at the BBMRI Stakeholder's Forum information and discussion meeting, held in Brussels, a patient-specific working subgroup of the Stakeholder’s Forum has been established.
As part of a comprehensive consultation and engagement process, a BBMRI Stakeholder's Forum Patient Working Group discussion meeting was held in Paris. This event was designed for patient organisations to contribute to the upcoming position paper on patient involvemnt in BBMRI, which is due to be distributed for consultation to all European Patient Organisations in February 2010.
For the meeting agenda as well as a list of meeting attendees, click here.
For a series of photos from the meeting, click here
Title: "The Patient Role"
Venue: INSERM, Paris
Date: Tuesday, December 15th, 2009
For copies of presentations delivered during the meeting, see below. Click on the titles to link to a copy of the presentation.
Plenary Session 1
1. The added value of patient partnership in biobanking
Cor Oosterwijk, Coordinator, FP7 PatientPartner Project
2. Biobanking and Patients – a USA perspective
Paula Kim, Translating Research Across Communities (TRAC), USA
3. Forty years of haemophilia research in The Netherlands: from a mail survey to a biobank?
Cees Smit, Dutch Genetic Alliance (VSOP)
Plenary Session 2
4. BBMRI - Ethical, Legal and Societal Issues
Emmanuelle Rial-Seebag, INSERM, Toulouse,and BBMRI WP6
5. Socio-Economic Impact of BBMRI
Ingeborg Meijer - Technopolis
6. Socio-Economic Impact of BBMRI
Laurent Bach -Beta
7. Expert Centres for Biobanking
Kurt Zatloukal, Medical University of Graz, Austria, and Coordinator of BBMRI
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