News item
Archive of: September, 2011
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Registries Guide
September 2011
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?
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If you have information about provision of specialised services that you would like to bring to our attention or if you would like to know more about the SHCA, please contact us at: team@shca.info