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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OpenApp is now hiring a Sr. Application Developer! Head to our website for more information and instructions to apply. https://www.openapp.ie/careers-at-openapp/frontend-developer-opportunity/

Our CEO, @ConHennessy, will be speaking about the Clinical Patient Management System (CPMS) next week at a the “Digital and Central: Treat rare diseases through digital networking across institutions” symposium. Learn more and register: https://bit.ly/3dfOptg #telemedicine

We have been building open source solutions for 18 years. #TBT to an interview of the late Mel McIntyre who founded OpenApp with the belief that “[open source] will help to remove the economic barriers to scalability and lead to more opportunities.” https://bit.ly/3g9BGup

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