Genetic Alliance Registry Bootcamp

Launching a registry can feel daunting but is actually easy with proper planning and the right platform. On February 9th, Genetic Alliance announced Registry Bootcamp — a new program designed to help advocacy organizations launch a successful registry. Resources offered in the Bootcamp are wide-ranging and provide intensive hands on training to enable a cohort of organizations to work through the various steps necessary to design and develop their own registries. Each group accepted to the cohort will receive support, guidance, and the required infrastructure (IRB application writing assistance, in-house IRB review, the data platform, EHR connectivity, etc.) needed to successfully create and launch a registry.

Registry Bootcamp is made possible through PEER, the Promise for Engaging Everyone Responsibly. PEER is Genetic Alliance's signature research program and platform, informed by 25 years' worth of working with advocacy communities to build patient registries. PEER allows communities to set up registries and studies to accelerate research on their condition. PEER is...

• Easy-to-use: We have a library of validated instruments, a survey builder for customized questions, connection to 700,000 EHR portals in the USA, and the capacity to connect with and store genetic and genomic information. We have also had our own IRB since 2003, so application and approval is easy.
• State-of-the-art: We have upgraded our technology over the past year in a partnership with LunaPBC, and we exceed the requirements of privacy regulations and guidelines such as GDPR and CCPA.
• People-centered: People control their data and always "keep a string" on it. Questions come to the data and are answered using our analysis environment.
• Cross-condition: Our interoperable database supports the study of phenotypes, pathways, and other commonalities between conditions.

For more information visit: http://www.geneticalliance.org/peer.

Invitation to Registry Bootcamp

We invite you to submit an interest form for our summer Registry Bootcamp cohort. You will receive a notification to submit an application once a request for applications (RFA) is released. Accepted applicants will receive the support, guidance, and infrastructure they need to successfully create and launch a registry or study -- including one year's free membership in the Promise for Engaging Everyone Responsibly. 

Question Submission
All questions should be submitted via email to Matthew Caffet (mcaffet@geneticalliance.org).

Registry Bootcamp Sponsors

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

Registry Bootcamp Training Sponsors

The training program sponsors enable a cohort of advocacy organizations to work through a series of steps either linearly or a la carte, culminating in an engagement plan, a research plan, a questionnaire or series of questionnaires, engage in peer to peer learning, and receive hands on mentorship from Genetic Alliance staff.