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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Avatar Openapp @OpenappIreland·

18 May

Back to in-person events, we are delighted to be face to face and learning from thought leaders across the Irish healthcare ecosystem at the Future Health Summit over the next 2 days! #FHsummit2022 https://www.futurehealthsummit.com/

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Avatar Openapp @OpenappIreland·

17 May

A standout first session today at the #RareDiseaseSummit2022 with Amanda Moore from @angelman and @ellabalasa1, CF advocate.

There are clearly many opportunities, as well as challenges, in investing in partnerships between patient orgs and industry. #RareDisease #registry

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Avatar Openapp @OpenappIreland·

17 May

We are delighted to be virtually attending the Rare Disease Innovation & Partnering Summit 2022!

Connect with @ConHennessy on the summit platform and learn how we support our patient organisation and industry clients in creating stronger partnerships!
https://informaconnect.com/rare-disease-summit/

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Avatar Openapp @OpenappIreland·

4 May

Such a great session! We are delighted our representatives could attend and discuss ways industry can support the rare disease community.

Rare Diseases Europe@eurordis

A new rare disease ecosystem in Europe relies on the engagement of all stakeholders.

Over 1️⃣0️⃣0️⃣ people have met at the @eurordis Round Table of Companies to discuss industry's role in laying the ground for an Action Plan on #RareDiseases to address unmet medical needs.

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Avatar Openapp @OpenappIreland·

28 Mar

OpenApp are pleased to announce the NF Registry by Children’s Tumour Foundation (CTF) is now live in four additional languages: French, Italian, Portuguese and Spanish. Learn more: https://bit.ly/3IF8fLn @ChildrensTumor #patientregistry

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