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Promise for Engaging Everyone Responsibly

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We are currently accepting applications to Registry Bootcamp: Click here to visit our Registry Bootcamp Invitation page. Applications due by March 8th.


Genetic Alliance believes that people should be in the driver’s seat, getting the answers to their own health problems. Through our decades of experience, we’ve realized that running a registry and/or a study is a perfect way to do so. This should be simple, just like any other technology solution you need. To that end, we have offered a registry system, called the Promise for Engaging Everyone Responsibly (PEER), since 2003. This system allows communities to set up registries and/or studies to accelerate research on their condition.

PEER has always been a cross-condition registry, creating an interoperable database so that phenotypes, pathways, and other commonalities between conditions can be studied, all in a system which revolves around the central focus: the individual.

Inviting the individual to be central and in control allows the sponsor (community) to establish a longitudinal system whereby they can capture data over time. The privacy of the individual is protected since their data never leaves the system and is only used with their permission. As a whole, this system is set up to allow individuals to “keep a string on their data”. Unlike other systems where the data is exported and shared over and over without the individual’s knowledge or consent, this system preserves our promise to the individual that they will always control their data. For more information on how this works, you can click here to view a paper which describes the importance of keeping a string on data. 

We have completely revamped our technology solution over the past year in a partnership with LunaPBC: we now exceed the requirements of privacy regulations and guidelines such as GDPR and CCPA and boast greater technical offerings than ever before.  In our new platform, individuals can easily connect their electronic health records from any of over 700,000 portals, upload genomic information, and describe their lived experiences via patient reported outcomes (PROS); we even offer sponsors a library of validated/common data instruments and a survey builder to support the creation of custom surveys (even in non-English languages). Beyond this, we have pioneered a method by which a community can assess the priorities of their members, allowing them to focus on what matters most. Watch this webinar recording showcasing demos of the participant experience, the admin dashboard, and the research environment. 

The PEER platform and program have both received IRB Approval and all registries and studies are also IRB approved. The Genetic Alliance IRB, which has been in existence since 2003, makes it easy to apply and receive approval.  The Genetic Alliance IRB also reviews non-PEER protocols, such as Genetic Alliance BioBank Protocols and other non-Genetic Alliance external studies and projects. For more information on the Genetic Alliance IRB, please click here.

Everything from simple prep for research or cohort development queries to clinical studies can be conducted using the in-platform virtual compute environment (the workbench); in this way, the questions are brought to the data and only answers leave. The workbench allows researchers to conduct studies on the data in the system across conditions, since the database is not siloed by disease or institution. Researchers can also bring external datasets to the workbench to analyze alongside data in the system. Various tools including Tableau, Jupyter notebooks, and R are available in the workbench with more being added over time: this increases the capacity of organizations that might not have data analysts and subscriptions to robust analysis tools readily accessible to them. Finally, when study data is to be readied for regulatory submissions or the like, the data can be published and captured as-is to substantiate the claims. More information on the workbench can be found here.

When you join PEER, you do not simply join a registry platform: you join a group of likeminded organizations who care about their community members just as much as you do. PEER is governed by a Board of Governors and Consortium, forming a two-tiered collective that allows the communities to make decisions about the policies, roadmap, and direction forward.

Numerous opportunities for training, collaborating, and collective problem-solving stem from this, allowing organizations to benefit not only from the experiences of their fellow PEER communities, but also from the 25+ years of registry experience the Genetic Alliance team has to offer. Capitalizing on this, Genetic Alliance puts forth a variety of opportunities, including “office hours” with staff from Genetic Alliance and LunaDNA, guest webinars which offer additional expertise, access to a forum established by the advocacy and community organizations around special topics, workgroups which dive into topics that are of concern to multiple communities, and even Registry Bootcamp.

Registry Bootcamp offers training for communities to establish and sustain a successful registry and/or study. Genetic Alliance is accepting applications to Registry Bootcamp beginning on February 9th. Invitation to submit an application can be found here.

Cost of PEER:

- $500 to apply
- $500 for initial registry-IRB application, review, and approval (on average)
- See below for monthly or annual costs

PEER is a cost-effective solution to your registry needs. Subscriber level, which includes use of the platform without technical assistance is only $50 - $150/month, depending on your budget. Consortium level is $5,000 to $30,000/year depending on your budget: this level allows the organization to participate in quarterly governance of PEER, and to receive hands-on support. Governors meet monthly to direct PEER’s roadmap and receive twice the level of support of Consortium members. Governors pay a flat fee of $50,000/year.  For more information on the Membership levels of PEER, click here, and for more information on process of joining PEER, click here.

There have been multiple published papers which describe our system and the merits of our process, which can be downloaded here and here.

We are currently accepting applications to Registry Bootcamp: Click here to visit our Registry Bootcamp Invitation page. Applications due by March 8th.

Need more information or want to join us? Please contact us. 


Promise for Engaging Everyone Responsibly webinar

 

 

 

 

 

 

 

 

 

 


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