International Conferences for Rare Diseases and Orphan Drugs
From WikiGenetics
This space is a 'sandbox' for ICORD discussions on Registries for Rare Diseases: Standards and Best Practices. Particpation is open to anyone interested in the topic of registries. Please contribute to the discussion and feel free to post relevant docs. We thank Sharron Terry of the Genetic Alliance (http://www.geneticalliance.org/ ) for providing us this wiki as a virtual space to collaborate between face-to-face ICORD meetings...
A group of interested ICORD members have been having intermittent discussions on this topic, with the goal of developing and promoting best practices in Registry design and implementation standards.
Rachel Richesson at Univ. of South Florida in Tampa, FL, USA has offered to coordinate discussion and posting of relevant materials. Please feel free to post or send to me (richesrl@epi.usf.edu) for posting.
I will be updating this space periodically. ICORD slides and notes and other *very* interesting meeting summaries and materials are expected soon so please stay tuned...
And be patient.. I am still learning this wiki thing... :) Rachel
[edit] An ongoing list of resources can be found at:
(please feel free to add to the list)
