LunaDNA Registry Participants – Request to Re-complete Survey

Thank you so much for signing up to take part in the EDS and HSD Global Registry on LunaDNA. 

As you may be aware our registry first lived on the Genetic Alliance PEER platform, which then became LunaDNA at the beginning of 2020. We have been very grateful to both the Genetic Alliance PEER platform and LunaDNA in helping make our dream of building a global registry a reality. 

We are very excited to announce that thanks to a generous donation we are now able to host our own GDPR and HIPAA compliant registry with a dedicated staff team using the internationally renowned REDCap system. From now on we will only be using the REDCap registry, therefore if you wish to be considered for any research opportunities (including ongoing Research such as HEDGE) please sign up to our new Global Registry by clicking the button below. Please note we will not be using the data in LunaDNA as we are not able to move it to the new REDCap system.

For people who participated in the original PEER system (in use until December 30, 2020): We will import your registry data so you will automatically be in the REDCap registry and hence do not need to repeat the Personal History survey or re-upload medical documents.

To learn more about HEDGE, please click here – there is no cost to you to participate.