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COVID Survey Opportunity for Communities

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Create a place for your community to share data through a simple health and stress assessment. This system can be used for any kind of community – not just disease or patient support/advocacy/research. It can be used for schools, classrooms, clinics, states, countries (we have several ramping up), sports teams, clubs, churches, temples - any community that wants to understand the impact of COVID on them.

The data collected is never sold and never leaves the platform. This is regulated by all of the human research protection oversight, and additionally, the Securities and Exchange Commission regulates the platform in a public circular - the fact that operations and commitments cannot change is codified.


Here is how this will work:

  • Each community will have a dashboard of activity to see what is happening in their community. Here is a presentation showing you what the experience for your participant will be like from landing page to registration.
  • To get started, fill out this form to give us all of the info you need to get your page customized.
  • After you fill out the form, you will hear from our partner James White at LunaDNA, where our project is hosted.

Click below to preview questions of both COVID surveys. Initially, the organization will receive an email receipt of Metrics report. In the next few months, each community admin will access the Metrics report through their own Admin dashboard inside the platform. Additionally, admins may purchase, at cost, researcher licenses to access a rudimentary cloud compute space to analyze the raw, de-identified data themselves. By establishing a registry in PEER, your community will not only have access to resources for managing and growing your advocacy group, but also the ability to collect data from your community including the COVID surveys, additional longitudinal surveys on COVID that we will be putting out over time, but also data from custom surveys you create specifically for your community, electontric health records, DNA files, and much more. The platform provides the tools to enable you to communicate with your participants, make specific requests and assign new surveys to them. Visit our registry page for more information about PEER - Program for Engaging Everyone Responsibly


Frequently Asked Questions

Can we make a distinction between a patient and a caregiver surveys?
The caregiver and the patient will need to create separate accounts to take the survey. The caregiver should then answer one as themselves (the caregiver) and in the separate account answer the survey as the patient. The question on health conditions should help differentiate them.
 
Who controls the data?
Each individual participants controls their data. Luna and Genetic Alliance have no access to the data. Only the community leaders and researchers with approval from an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities can access the data in the virtual compute environment.
 
Can we add questions specific to a rare disease/chronic condition?
Yes, if you move to our paid subscriber level. This COVID offering is a free offering, for the COVID questionnaire. As a courtesy, we are able to tag your participants as belonging to you. The other features of the Program for Engaging Everyone Responsibly, which are certainly important in the long term, are available to subscribers of PEER. Registry costs begin at $50/month for foundations without a large budget. Visit our registry page - Program for Engaging Everyone Responsibly (PEER) - for more information.
 
How does an organization or physician access data?
Initial access will be limited to email receipt of a metrics report. In the next few months, each community admin will access the Metrics report through their own Admin dashboard inside the platform. Additionally, admins may purchase, at cost, researcher licenses to access a cloud compute space to analyze the raw, de-identified data themselves. This is part of the paid membership in PEER.
 
Does Genetic Alliance or LunaDNA sell data?
No. Neither we nor Luna would EVER sell data. The essence of this system is that the questions come to the data in a virtual compute environment on the system. Data never leaves the system. People keep a “string on their data” in perpetuity. In fact, the system is overseen by the SEC and the structure is transparent and publicly available in a rather lengthy document. Luna is a Public Benefit Corporation. Genetic Alliance is a 501 (c) (3).
 
Is Genetic Alliance paid for referring registries to LunaDNA?
No, Genetic Alliance is not paid for referring registries – this is our registry system. Together with Luna, we run this - Genetic Alliance “owns” the relationships with the organizations, and Luna “owns” the platform.
 

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