Genetic Alliance (GA), a network of more than 1,000 disease-advocacy organizations (DAOs), leads the Community-Engaged Network for All (CENA) initiative. CENA is designed to pilot several new methods for facilitating heightened collaboration between research participants and researchers. In this network, GA is collaborating with the University of California, San Francisco (UCSF); University of California, Davis (UCD); Private Access; and ten DAOs that were selected by GA from nearly 100 applicants.
The participating DAOs are Alström Syndrome International, Dyskeratosis Congenita Outreach, Inflammatory Breast Cancer Research Foundation, Hepatitis Foundation International, Joubert Syndrome Foundation, KS&A (extra X and/or Y chromosomes), MLD (metachromatic leukodystrophy) Foundation, National Gaucher Foundation, National Psoriasis Foundation, and PXE (pseudoxanthoma elasticum) International. The conditions covered range from rare to common and cover a broad demographic spectrum. UCSF and UCD will invite researchers and their patients into CENA.
Through CENA, online registries for each condition represented by the DAOs will be either launched or upgraded using GA’s Platform for Engaging Everyone Responsibly (PEER). PEER enables cost-effective data capture from participants through a game-like interface that maximizes participant retention by providing immediate feedback on answers. The system also allows continual fine-tuning or addition of questions in response to input from DAOs and academic research partners. With PEER, each participant determines with whom and for what purpose his or her information may be shared. GA will provide technical assistance for engaging communities to share their information safely online. The initiative will use and improve participant-led governance models that GA has pioneered.
CENA will test recruitment of patients from academic medical centers into participant-led models. Additionally, through collaboration with the UCSF-based Health eHeart PPRN, the initiative will assess recruitment of patients who have cardiovascular disease as well as the condition represented by one of the DAOs.
By supporting a broadly accessible online environment where communities and researchers have equal voice in the development of research hypotheses, CENA will pilot new methods of facilitating collaboration among researchers and participants. The initiative plans to employ a tool called Open Proposals, developed by UCSF, to support dynamic and meaningful communication between individual participants, DAOs, and medical researchers. CENA will also support the DAO-led communities through intercommunity collaboration and sharing of best practices.