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Genetic Alliance Registry Bootcamp

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Launching a registry can feel daunting but is actually easy 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 Registry Bootcamp course in Spring 2021 and are currently running our second course, with additional opportunities forming for later this year and next. Resources offered in the Bootcamp are wide-ranging, and provide hands-on training to enable organizations to work through the various steps necessary to design and develop their own registries. Each group accepted to Registry Bootcamp will receive the support and guidance needed to successfully create and launch a registry. Communities who elect to use Genetic Alliance’s registry solution, the Promise for Engaging Everyone Responsibly, will also receive access to the required infrastructure to launch a registry (IRB application writing assistance, in-house IRB review, the data platform, EHR connectivity, etc.). However, use of PEER is not required to participate in Registry Bootcamp.

 

About PEER


The Promise for Engaging Everyone Responsibly 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 Cross-condition: Our interoperable database supports the study of phenotypes, pathways, and other commonalities between conditions.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.


 

Sign up to learn about future Registry Bootcamp cohorts

We invite you to submit an interest form for future Registry Bootcamp cohorts. You will receive a notification to submit an application once course dates have been finalized.

 

 


Question Submission
All questions should be submitted via email to Katherine Lambertson (kambertson@geneticalliance.org).


 

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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