Talk:International Conferences for Rare Diseases and Orphan Drugs
From WikiGenetics
Ownership of registries -
Different opinions were expressed at the ICORD 2009 Rome meeting on the topic of Registry 'ownership' and data stewardship. Some felt that the experience and resources and motivation of pharmaceutical companies almost certainly leads to better quality registries... Others strongly felt that Patient Advocacy Groups are uniquely suited to best promote the registry and protect the data....
Thoughts?
