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Promise for Engaging Everyone Responsibly

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People at the center, people generating and sharing data, people controlling access to their data, people allowing access to data for shares. PEER.

PEER offers communities: advocacy organizations, nonprofits, clinics, any group (the sponsor) a simple way to establish a registry (data collection) for the purpose of characterizing the community - needs, issues, disease phenotypes, disease progression, and impact on affected individuals and families. [Available now]

The registry is branded with the logo and style and colors of the sponsoring organization. Genetic Alliance and Luna’s brand is not conspicuous, and appears as a “powered by” image. The sponsor’s members come to a place they recognize and trust. [Available now]

The focus, the central unit, is the individual. The system is constellated around each individual. Doing this breaks down the typical silos. As the central element, individuals can connect their lived experience (patient reported outcomes (PRO)) with their electronic health records and any genomic information they might have. This removed the problem of de-duplicating multiple databases. In addition, individuals can belong to multiple registries, since the underlying database is the same for all conditions. [Available now]

Participants in PEER receive shares in LunaDNA. This is qualified by the Securities and Exchange Commission and an offering circular detailing the operating terms is publically available. [Available now]

Inviting the individual to be central and in control, allows the sponsoring advocacy organization to establish a longitudinal system whereby they can capture data overtime. The privacy of the individual is not compromised since their data is accessed, with their permission, in an aggregate form, until the organization or approved researchers invite the individual, through an unidentified message,  to respond to an additional query, survey, or request to participate in a study. [Available now, with enhancements in Spring 2020]

A library of surveys, “common data instruments”, is available, some of which were adopted from the NIH repository and other standards based collections. Individual sponsors can also easily create surveys and instruments that meet their specific needs. [Available now, will be enhanced throughout 2020]

This system allows individuals to “keep a string on the data”. Unlike other systems where the data is exported and shared, and likely shared again, this preserves our promise to individual to control access to their data. [Available now]

PEER is governed by a Board of Governors and Consortium. A two tiered collective that allows the disease advocacy and other communities that host registries to make decisions about the policies, roadmap, and direction. [Available now]

Numerous opportunities for training, collaborating, and collective problem solving leverage the incredible peer learning amongst the 25 advocacy organizations already participating in PEER. PEER Bootcamp is a many step process for establishing and sustaining a registry. “Office hours” with staff from Genetic Alliance and Luna provide technical assistance. Guest webinars offer additional expertise. Forum established by the advocacy and community organizations around special topics offer workgroups to dive into topics that are of concern to more than one group. [Available now]

The entire system, each registry, and study, are overseen by the Genetic Alliance Institutional Board. This IRB, established in 2003, has overseen hundreds of registries and studies. The IRB provides clear templates that make the expedited approval, any subsequent amendments and other reports easy. [Available now]

Rigorous studies can be conducted in virtual compute environments, sandboxes, enabled by the technology that powers PEER. The questions are brought to the data. These virtual compute environments, created by LunaDNA, allows researchers to conduct studies on the data in the system. This is across disease, since the database is not siloed by disease or institution. Researchers can also bring proprietary databases to the sandbox and use them, either contributing them to the individuals records, or embargoing the data and removing it when the study is over. Various tools are available in the compute environment and others can be brought to the instantiation and used there. This increases the capacity of advocacy organizations that might not have data analysts and subscriptions to robust tools at the ready. And, when study data is to be readied for regulatory submissions the data can be published for the submission – captured as is to substantiate the claims. [Initial basic sandbox in Summer 2020, enhanced versions in Fall 2020 and beyond]

Credentialing of researchers, data use agreements, and data sharing agreements are among the many policies that are built into PEER. This creates an environment where research can be done quickly and cheaply, eliminating some of the barriers to typical multi-institutional research. [Some available now, some rolling out in dialogue with the Consortium, particularly the Governors]

This is a cost effective solution. 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 $45,000/year depending on budget – allowing the sponsor to govern the process and program. Governors who have the greatest influence over the roadmap and timing of enhancements pay a flat fee of $50,000/year.

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

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