Genetic Alliance Registry Bootcamp
Invitation to Registry Bootcamp
Applications for Registry Bootcamp are now open! The program will guide you through a methodological process that will result in launching your registry on Promise for Engaging Everyone Responsibly (PEER) - an award-winning registry system.
Genetic Alliance is offering one year of free Consortium-level PEER Membership for all groups accepted to join Registry Bootcamp (typical cost $5,000 - $49,999). Download the Request for Applications for more details. Due to requests related to COVID and severe weather, we have agreed to extend the deadline for applications to March 8.
About Registry Bootcamp
Launching a registry can feel daunting but is actually easy with proper planning and the right platform. On February 10th, Genetic Alliance opened the application for 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.
Genetic Alliance believes that running a registry and/or a study should be simple. To that end, we have offered a registry system since 2003. This system allows communities to set up registries and/or studies to accelerate research on their condition. It is cross condition, creating an interoperable database so that phenotypes, pathways, and other commonalities between conditions can be studied. People control their data and always have a string on it. We have upgraded our technology over the past year in a partnership with LunaPBC. We exceed the requirements of the host of privacy regulations and guidelines such as GDPR and CCPA. We have a library of validated instruments, a survey builder for your customized ones, 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. The system also includes an analysis environment including Tableau, Jupyter notebooks, R and so on. All of this is ready for you to set up your registry or study. For more information visit: http://www.geneticalliance.org/peer.
Promise for Engaging Everyone Responsibly webinar
Question Submission
All questions should be submitted via email to Mattew Caffet (mcaffet@geneticalliance.org).
