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White Label Project (funded by Robert Wood Johnson Foundation)

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We are currently no longer accepting applications to join the White Label Project.

With this request for proposals (RFP) Genetic Alliance invites organizations, communities, projects, programs, and other collectives interested in health to participate in creating a survey, registry, or campaign using the Platform for Engaging Everyone Responsibly (PEER). PEER enables individuals to share health information on their own terms. This allows trusted communities to collect information, and help advance health for their members while addressing issues that matter to them.

Genetic Alliance will choose sixteen organizations interested in health to utilize PEER to engage their communities in participant-centric research. Ten of these slots will be given to community-based organizations serving marginalized communities, and six slots will be given to disease-related advocacy organizations. These organizations will help Genetic Alliance to assess the experience of PEER sponsors, for the platform’s ease of use and also for their participants’ reaction to sharing. This project is supported by a grant from the Robert Wood Johnson Foundation (RWJF) and RWJF staff will participate in it and monitor its progress.

Download the complete RFP information here.

Download the application form here.

View frequently asked questions here.

 

Timeline:

Request for Proposals Released:    February 8, 2016

Question Period:    February 8-17, 2016

Questions and Answers Released:     Ongoing

Proposals Due:    March 17,  2016, 11:59 PM EST

Applicants Notified of Decision:   (new date) Friday, March 25, 2016

 


Background Information

Since 2003, Genetic Alliance has managed a patient-built and -governed, cross-disease research network for participant-centric research on a variety of diseases, known as the Genetic Alliance Registry and BioBank (GARB). Participants in GARB have powered many studies, peer-reviewed papers, clinical trials, and even post-marketing drug studies. In 2008 Genetic Alliance began to expand this vision, working with technology partner Private Access to develop improved ways for individuals to grant faster, easier, and less costly access to otherwise confidential information in order to improve care or accelerate research. These efforts culminated in the development of a novel platform for participant-centric research networks, the Platform for Engaging Everybody Responsibly (PEER). PEER is a cross-condition platform with a number of remarkable characteristics. The platform empowers individuals to share health information with each other and researchers on their own terms, by setting sharing, privacy, and data access preferences within a dynamic and granular system made possible by PrivacyLayer® technology from Private Access. This system provides the flexibility needed to engage diverse opinions around data sharing, while creating the opportunity to participate in multiple research projects over time.

Since PEER's official launch in 2011 Genetic Alliance has launched 25 registries for a variety of conditions and non-disease communities, all using PEER technology. As the registry has expanded, however, Genetic Alliance has identified a need for an improved system which will permit participating communities and organizations to build registries quickly and efficiently.

In 2015 Genetic Alliance received a $500,000 grant from the Robert Wood Johnson Foundation to 'white label' PEER, allowing many groups to set up registries as simply as they could set up a Facebook account. The 'white label' version of PEER includes a simple dashboard and standard operating procedure to facilitate easy customization of the system by organizations and collectives wishing to offer it to their communities. The new system is designed to be exceedingly easy to set up and deploy, and as part of the grant thirty new organizations and collectives will come on to the platform to "test" its ease-of-use, both for themselves and their members. Fourteen of these pioneers were selected through a competitive award process in early 2015. The next sixteen will be awarded through the current RFP in March 2016. As a part of winning this award, the organization or collective will share feedback with Genetic Alliance, to help improve the experience of setting up and deploying a registry using PEER.

 

Phase I Awardees:

In the first phase of this grant Genetic Alliance awarded fifteen organizations interested in health to utilize PEER to engage communities in building registries and/or conducting surveys. These organizations are also helping Genetic Alliance to assess the experience of PEER participants as they make decisions about data sharing. 

View Full List of Phase I Awardees

 


Frequently Asked Questions

 

The Application

How can my organization/group/collective apply?

What is the deadline?

What will Genetic Alliance provide to the awardees?

What collectives and organizations can apply?

Can for-profit organizations and collectives apply?

Will award recipients have any financial obligations?

What are the timelines and deliverables for development for awardees?

Are there guidelines for creating a budget size?

Will my organization be able to afford this registry after the grant ends (September 1, 2016)?

My organization/collective is small and has only volunteer staff. Can we still apply?

In Appendix B of the RFP, does the number of participants refer to the total number of responses or just for that month?

In Appendix B of the RFP, what is the Financial Means Limit?

With respect to the resumes, does "key personnel" refer only to the the organization/collective’s staff or would it also include any consultants?

What are the expectation for number of enrollees for awardees?

Can universities apply for the grant?

Do you accept applications from outside the United States?

My organization already has a registry. Why would we apply to participate in creating a registry using the Platform for Engaging Everyone Responsibly (PEER)?

 

PEER

What is PEER?

Who will have access to my registry participants’ data?

Who controls access to the registry as a whole? Does the awardee organization approve such requests or is that done centrally through a network run by Genetic Alliance?

Where will the project/registry/survey’s data be stored?

Who owns the data in the registry?

Who is liable for unauthorized or misused data?

Who decides the focus of our registry or campaign?

Can I brand my project?

To what degree will mobile technology or apps be used in collecting data or communicating with participants?

Do I need to get IRB approval for my project?

Are awardees required to use the Genetic Alliance IRB rather than local IRB? Do awardees use both?

Are there any tools available for batch import of registry data, or must everything be entered manually?

Can PEER store data files such as CTs, MRIs, EEGs, other images, sequence data?

Do you have documentation about the reporting/data mining tools available to the awardee organization?

What types of reports must be submitted and on what schedule?

 

Additional Information

What is Disease InfoSearch?

What is GaugeRx?

What is NETS?

 

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