The Future of Registries: Comments from the Community Research
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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189-193 Parnell Street,
Ireland.
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To mark 20 years of CF data collection long time partners of ours @CFRegistryIE are hosting an event centred around patient registries. For those interested in the registry space it promises to be an informative event on a very topical subject within the rare disease industry.
To celebrate 20 years (& counting) of reporting @CFRegistryIE data, CFRI, alongside @HRCIreland, are hosting an event for those working in or with registries/are interested in developing #PatientRegistries in Ireland.
Check out more info & register here: https://www.eventbrite.co.uk/e/468480135697
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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