The Future of Registries: Comments from the Community Research

Research_Survey

The Future of Registries – Comments from the Community is the first part in a series of initiatives designed to engage as many people in conversations to get a better, shared understanding of the usage and benefit of rare disease patient registries.

We have created this survey to gain real world insights into registries as of early 2019.

We would like to get as much feedback and comments from the community to get a clear picture of the current state of registries.

We are looking for your help and time in filling out this short survey, it will take less than 10 minutes and we really appreciate your time.

Findings gathered will be shared with the community. We would also appreciate you sharing this survey with your colleagues in the rare disease community.

Thank you in advance for your time.

Click here to start the survey - https://www.surveymonkey.com/r/future_of_registries

The OpenApp team

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Great talk from Prof. Edward Gregg @noca_irl discussing the benefits of registries in intervention and effectiveness research #noca2023

An excellent Impact Report presented by NOCA Exec. Director Collette Tully, detailing the QOL of Patients post arthroplasty surgery benchmarked by country and the impact INOR has had on policy #NOCA2923 #NOCAIrl

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