Details and Information
Areas of Focus: allergies, Alström syndrome, arylsulfatase A deficiency, asthma, Austin disease, breast cancer, celiac disease, Cogan-type oculomotor apraxia, Dekaban-Arima syndrome, dyskeratosis congenital, familial pulmonary fibrosis, fibrolamellar hepatocellular carcinoma, hepatitis, inflammatory breast cancer, Jacobs syndrome, Joubert syndrome, juvenile nephronophthisis, Klinefelter syndrome, Meckel-Gruber syndrome, metachromatic leukodystrophy (MLD), mucosulfatidosis, multiple sulfatase deficiency, pseudoxanthoma elasticum (PXE), saposin B deficiency, Senior-Loken syndrome, sex chromosome aneuploidy, telomere biology disorder/syndrome, trisomy X, Varadi-Papp syndrome, X and Y chromosome variations.
Population Characteristics: Multiple co-morbidities
Organization: Genetic Alliance
Contact: Matthew Smith, CENA Project Manager
Principal Investigator: Sharon Terry, MA
The Community Engaged Network for All (CENA) is a network led by Genetic Alliance and consists of 11 different disease advocacy organizations (DAOs). In addition, CENA harnesses the power of partnerships with Private Access, the University of California – San Francisco, and the University of California – Davis to transform traditional clinically-driven research to people-driven research.
As part of PCORnet, CENA aims to drive people-centered research on a larger scale among all players within the healthcare system. CENA provides methods and tools that empower everyday people to be full participants in the research enterprise, work with a variety of stakeholders to prioritize research questions most important to them, and drive new studies to alleviate suffering in their own communities. CENA aims to accomplish this by piloting and facilitating new online methods of collaboration among researchers and participants, particularly in the sharing of health data and informing research priorities.
Currently, CENA engages its communities and builds participant-centric research cohorts using two online tools:
- The Platform for Engaging Everyone Responsibly (PEER) where individual participants can share their health data with researchers, organizations, and data analysis platforms of their choosing, according to their own privacy settings
- MOSAIC is a collaborative forum where participants, patients, clinicians, researchers, and other research stakeholders come together to design, implement, and disseminate research studies