REGISTRY
BOOTCAMP
A program designed to guide you through a methodological process that will ensure not only a sophisticated technology platform, but success in its use and meeting overall registry goals.
Advocacy, Education & Empowerment
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 YOUR EXPERIENCEWITH REGISTRIESIf you run a registry, please answer this anonymous survey to help advocacy organizations in understanding what it takes to run a registry - cost to start up, staff needed, and so on.
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 ALL COMMUNITIESARE WELCOMEPEER offers communities (the sponsor) a simple way to establish a registry. It is a sophisticated registry and study system, and a cost-effective solution to your registry needs.
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Highlights
Everyone is encouraged to participate—this is a borderless data sharing community for both those feeling healthy and those needing medical attention.
The Genetic Alliance IRB reviews and monitors studies involving human participants to ensure that the highest ethical standards adhear involving the use of humans as subjects in research.
Curated and crowd sourced disease information to help individuals access quality and credible information. Over 10,000 conditions listed.
