The Future of Registries: Comments from the Community |
1. Introduction
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.
Findings gathered will be shared with the community; it’s purpose is 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 survey, it will take less than 10 minutes and we really appreciate your time.
We would also appreciate you sharing this survey with your colleagues in the rare disease community.
Findings gathered will be shared with the community; it’s purpose is 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 survey, it will take less than 10 minutes and we really appreciate your time.
We would also appreciate you sharing this survey with your colleagues in the rare disease community.
This will really benefit the community.
Thank you in advance for your time.
The OpenApp team
Thank you in advance for your time.
The OpenApp team