G-PACT is pleased to announce that we have been chosen as one of only 15 organizations nationwide to participate in the initiative to create a ‘white label’ of the Platform for Engaging Everyone responsibly (PEER). PEER enables individuals to share health information with researchers and each other on their own terms to advance an understanding of health and disease, and to accelerate the development of cohorts for clinical trials. The fifteen selected awardees will work with Genetic Alliance to develop and refine the ‘white label’ PEER while engaging their communities.
This initiative is made possible through a $500,000 Robert Wood Johnson Foundation grant awarded to Genetic Alliance. Genetic Alliance and technology partner Private Access will collaborate with us to cost effectively expand participant-centric health research.
G-PACT, through the Gastroparesis Registry will be collecting data from patients on the effects of this disease on health and daily living. By collecting this data, G-PACT is hoping to obtain information that will help researchers direct and focus research studies to find better treatment options and cures. The Registry will collect more in-depth data than the recent FDA survey, and will be available to a larger range of researchers.
G-PACT has been the most prevalent non-profit organization dealing with patient support and advocacy for individuals suffering from digestive tract diseases. The latest estimates indicate that symptoms for these diseases may be experienced by up to 4% of the population of the United States. We have access to more than 10,000 people through our social media sites and additional outreach through other non-profit organizations.
The data gathered through the survey will be accessible to researchers and applicable not-for-profit patient organizations, at the discretion of the participant-individuals through the privacy settings they themselves choose. G-PACT hopes to help researchers understand gastroparesis better, so that better treatment options can be discovered and, ultimately, a cure can be found.
The information gathered will be categorized and summarized, to facilitate a patient-privacy-approved exchange with medical professionals via the PEER platform outlined in Western IRB PEER001. The Institutional Review Board (IRB) is a committee established to review and approve research involving human subjects. The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines.
In addition to IRB approval, all members of the G-PACT Registry team have completed training through the National Institutes of Health for Protecting Human Research Participants.
We anticipate that the Registry will be up and running before the end of 2015. Please watch for announcement – your participation is important!