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Monday, 18 January 2010 16:41 |
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Representative patient organisations are a crucible of observation and experience which justify their place as partners in research. Indeed, an increasing number of patient organisations are working towards creating their own databank or biorepository.
For most patient organisations, the primary objective for their involvement is to find the cause of their disease or to improve their treatment options. Several examples exist today which demonstrably show that it will be impossible to neglect patient organisations as a stakeholder in biobanking practices. It is in this context that the Patient Working Group of the BBMRI Stakeholders’ Forum was established and is assembling a consultation document to highlight the importance of active participation of patients and patient organisations in biobanking activities.
Click here to view proceedings from the Patient Working Group meeting, Paris, Dec, 2009
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