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Archive of: September, 2011

  • Registries Guide

    One of the recommendations in the Alliance’s report Leaving no one behind (January 2011) concerned the importance of registries in supporting good care and clinical research for people with rare conditions. The attached guide seeks to support that recommendation by helping patient organisations answer two main questions:

    • Would it be useful and practicable for us to set up a registry?
    • What are the key issues that we must take into account when setting up a registry?