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Genetic Alliance Registry Bootcamp

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Launching a registry can feel daunting but is manageable with proper planning and the right platform. On February 9th, 2021, Genetic Alliance announced Registry Bootcamp — a new program designed to help advocacy organizations launch a successful registry. We offered our first two Registry Bootcamp courses in Spring and Fall 2021 and will offer the course once more this year, from November 9th through December 9th. Registry Bootcamp offers communities a deep dive into the world of registries. Resources provided in the course are wide-ranging, and will guide communities through the steps necessary to begin designing and developing their own registries. Each group accepted to Registry Bootcamp will receive the guidance and support required to plan and launch a registry or study. Communities using Genetic Alliance’s registry solution, Promise for Engaging Everyone Responsibly (PEER), receive access to the required infrastructure to set up a registry, including IRB application writing assistance, in-house IRB review, the data platform, EHR connectivity, etc.). However, the use of PEER is not required to participate in Registry Bootcamp.

For more information and key course dates, please review the Registry Bootcamp Winter 2021 syllabus.


Join Registry Bootcamp today!

We are currently enrolling participants in our winter cohort for Registry Bootcamp, which will run from November 9th through December 9th. Sign-ups are live through November 5th. If you are not able to participate during these dates but would like to learn about future opportunities, please fill out our interest form.

Note to prospective participants: while most of the course content for Registry Bootcamp is available for you to complete at your own pace, there are three mandatory group calls. These calls will take place on November 9th from 1-2:30 pm EDT, on November 23rd from 1-3pm EDT, and December 9th from 11am-1pm EDT. If you have a pre-existing conflict with these meetings, we will ask you to indicate this in the registration form.



Question Submission
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Registry Bootcamp Sponsors

Support provided by the following corporations and businesses allows for the development and implementation of content for Registry Bootcamp. These partnerships make it possible for advocacy organizations to receive an outstanding array of resources, tools and training on topics that lead to the creation of a disease specific registry, natural history study, observational study, or other clinical study.



Registry Bootcamp Training Sponsors

Support provided by the following corporations and businesses allows us to run the Registry Bootcamp training program.The Registry Bootcamp training program enables advocacy organizations to work through the steps to launching a registry or study, either in a linear fashion or à la carte. Completion of the program culminates in creation of an engagement plan, research plan, and questionnaire or series of questionnaires. Participants engage in peer-to-peer learning, and receive hands-on mentorship from Genetic Alliance staff.


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