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  • Community-Engaged Network for All (CE...

Community-Engaged Network for All (CENA) - Phase I

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Project Summary  

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.

Journal Articles

Related Articles

Clinical Gastroenterology and Hepatology

Numbers and Features of Patients With a Diagnosis of Celiac Disease Without Duodenal Biopsy, Based on a National Survey

Nutrients

The Effect of Depressive Symptoms on the Association between Gluten-Free Diet Adherence and Symptoms in Celiac Disease: Analysis of a Patient Powered Research Network

Human Genomics

Including all voices in international data-sharing governance

Human Mutation

The Matchmaker Exchange: a platform for rare disease gene discovery

Human Mutation

Participant-driven matchmaking in the genomic era

More on this Project  

View Phase II Award

Project Details

Principal Investigator
Sharon Terry, MA
Project Status
PCORnet: Phase I completed; Phase II in progress
Project End Date
August 2015
Organization
Genetic Alliance, Inc.
Year Awarded
2013
State
District of Columbia
Project Type
PCORnet: Patient Powered Research Networks (PPRN) Phase I
Project Budget
$982,283
Study Registration Information
HSRP20143621
Page Last Updated: 
October 7, 2019

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April 19
Increasing Vaccine Confidence among Long-Term Care Workers: Expedited COVID-19 PFA -- Applicant Town Hall
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Advisory Panel on Healthcare Delivery and Disparities Research Spring 2021 Meeting
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Cycle 2 2021 Nonsurgical Options for Women with Urinary Incontinence -- Applicant Town Hall

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