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Promise for Engaging Everyone Responsibly (PEER) Membership Process Overview

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Overview

At this point you’re deciding at what level to join us at, so this is the decision you'll be making right now. Everything beyond here are steps to be undertaken once this decision is made. Genetic Alliance offers the Promise for Engaging Everyone Responsibly to organizations like yourself wishing to establish and organize a community, recruit individuals to join registries/studies, and collect data for biomedical research purposes.

This page acts as a preview of what you'll be undertaking as you become a member and provides guidance on the steps to join PEER.

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


Promise for Engaging Everyone Responsibly webinar

 

 

 

 

 

 

 

 

 

 

 


Table of Contents (Steps)

Choose a PEER Membership level

Receive access to, and fill out, the PEER Membership Application

Pay the PEER Membership Application fee

Receive access to, and fill out, the Genetic Alliance Institutional Review Board (IRB) application

Pay the IRB review fee

Sign the Registry Agreement

Pay the appropriate fee (based on Membership Level)

Set up and use your registry

 

 

Choose a PEER Membership level

PEER is governed by a Consortium using a co-op model. Organizations and/or communities such as yourself that join PEER are called “Sponsors”. Welcome to the Consortium! As a PEER Sponsor you have access to services based on the level of membership you subscribe to in the Contract. Review a copy of the PEER Program Registry Agreement (also referred to as a Membership Agreement) for a more complete description of services and fees for the three subscription levels: Subscriber, Consortium, and Governor. DO NOT FILL IT OUT - you will be asked to sign the Agreement after approval of IRB.

Subscriber Level (Click to Expand)

Consortium Level (Click to Expand)

Governor Level (Click to Expand)

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Receive access to, and fill out, the PEER Membership Application

Prepare these documents to include in the membership application*:

  • IRS determination letter documentation of IRS Determination of Non-Profit status.
  • Most recent IRS Form 990 or tax-filing equivalent.
  • Most recent Independent Auditor’s Report (sometimes called the Management Letter).
  • Board of Directors roster, including contact information. (We will not contact them unless you default on your responsibilities as outlined in the Membership Agreement.)
  • Professional advisory board roster, including contact information. (We will not contact them unless you default on your responsibilities as outlined in the Membership Agreement.)
  • A copy of your Directors and Officers (D&O) insurance binder.
  • One letter of commitment from the President of the Board of Directors stating that they have read and agree with the Membership Agreement.
  • If you are not a clinical or scientific organization, include a letter of support from the Professional Advisory Board.
  • If you represent a community, a letter support from one of the community members (e.g. disease advocacy organization – a letter from a patient; environmental organization – a letter from a member).

*Note: if you are applying for the BioBank at the same time, check with us to see which of these items can suffice for both applications.

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Pay the PEER Membership Application fee

Upon submitting your application, you will receive an invoice for a $500 PEER Membership Application fee. Genetic Alliance will send an invoice by email through QuickBooks to the billing contact. This fee is waived for Consortium and Governor level membership.

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Receive assistance obtaining Institutional Review Board (IRB) approval

You must obtain Genetic Alliance IRB approval before you can commence using the registry. This application is available online and you will receive access to it once you’ve reached that point.

The primary purpose of the Genetic Alliance IRB is to protect the rights and welfare of human participants involved in research activities being conducted under its authority. For information about the regulatory requirements, please see our Policies and Procedures.

As a part of your IRB application, you will need to show that your registry investigators are certified in Human Research Participant Protections. This includes your principal investigator (PI), any co-investigators or co-PIs, and the project manager(s) and/or coordinator(s) that work on your registry. In general, we recommend that all staff at your organization who manage the registry complete this training.

There are multiple acceptable forms of human research participant protections training. Two of the most common tend to be the Research Protecting Human Research Participants (PHRP) training or the Collaborative Institutional Training Initiative (CITI) Human Research Subjects (HSR) training.  Beyond that, some academic institutions provide their own, and the Office for Human Research Protections (OHRP) has just begun offering their own free option.

Once you are submitting your IRB application, as mentioned above, the certificates of completion awarded to all staff at your organization who manage or access the registry will have to be included along with your application.

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Pay the IRB review fee

The IRB review fee is $500, payable upon submitting your PEER IRB application. Genetic Alliance will send an invoice by email through QuickBooks to the main or billing contact.

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Sign the Registry Agreement

This is the final step in becoming a PEER Sponsor. We will send a pre-filled agreement based on the information you submitted in the application via the contract software PandaDocs. Please review and sign.

As stated above, and clarified in detail in the Registry Agreement (also referred to as the Membership Agreement), as a PEER Sponsor, you have access to services based on the level you subscribe to in the contract. Immediately following the IRB approval, Genetic Alliance will send you the Registry Agreement.

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Pay the appropriate fee (based on Membership Level)

As stated in the “Subscription Fee and Payment Terms” section of the Registry Agreement, the appropriate fee associated with your membership level will be billed upon signing the agreement. Genetic Alliance will send an invoice for the initial fee by email through QuickBooks to the billing contact:

  • Subscribers will receive an invoice for the first month’s fee based on the organizational expenses in the previous year (line 18 of the 990 form). Additionally, Subscribers will be asked to submit Automatic Credit Card Billing Authorization Form for monthly auto-billing.
  • Consortium will receive an invoice for the annual fee based on organizational expenses in the previous year (line 18 of the 990 form), pro-rated based on the date of Membership Agreement signing.
  • Governors will receive an invoice for the annual fee of $50,000, pro-rated based on the date of Membership Agreement signing.

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Set up and use your registry

Once you've reached this point, you're ready to begin setting up your registry/study. The earliest steps in this process involve sending in your logo and desired verbiage for the creation of your landing page and beginning your survey development process (for now, this will be an assisted process, but in the future, you will be able to do this entirely on your own within the platform). Analysis in the workbench can incur additional fees based on quantity and type - contact us for more details.

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

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