Please see the official Press Release from Genetic Alliance on the launch of JS-LIFE to help you understand the gravity of this moment for us as a small foundation. ---------------------------------- FOR IMMEDIATE RELEASE PCORnet CENA Project Launch- Spotlight on the National Gaucher Foundation and Joubert Syndrome and Related Disorders Foundation WASHINGTON, DC (September 15, 2014) Community Engaged Network for All (CENA), a health data network initiative develop by Genetic Alliance, announced today that two of the nine disease advocacy organizations in the network launched research registries today. The Joubert Syndrome & Related Disorders Foundation (JSRDF) launched the Joubert Syndrome Link to Information and Family Exchange (JS-LIFE) (jsrdf.org/JSLIFE) and the National Gaucher Foundation (NGF) launched the Gaucher Network Registry (GNR) (gaucherdisease.org/gaucher-network-registry.php). Each of these new registries is built on CENAs Platform for Engaging Everyone Responsibly (PEER), developed in conjunction with technology partner Private Access. It allows each individual to determine his or her own level of personal data sharing, privacy and access preferences. As individuals enter health information into these registries, they will see in real-time a comparison of their responses with the grouped anonymous answers of other participants, thanks to technology by Traitwise. PEER and each specific registry have Institutional Review Board approvals. Matthew Smith, principal investigator for JS-LIFE said: “JS-LIFE is a truly transformative patient-centered registry for those with Joubert syndrome and related disorders. Those with rare conditions don’t always have a strong voice in medical research and advocacy. If those with Joubert syndrome and other rare conditions cannot speak for themselves, then it is our duty at disease advocacy organizations like the Joubert Syndrome & Related Disorders Foundation to advocate boldly for them. CENA and JS-LIFE do just that, allowing the voices of those with Joubert syndrome and other related conditions to be heard: loud and clear. THEY control their own data, THEY are empowered, and THEY are given the voice that they deserve in rare disease advocacy and research. The ultimate goal of JS-LIFE is to improve the lives of those with Joubert Syndrome and related disorders by providing more appropriate means of information sharing and facilitating reciprocal medical research and care they greatly desire. Each community or organization customizes PEER for their own use. Rhonda P. Buyers, CEO of NGF states, “It is important to us that PEER reflects our branding, uses guides from our community, and communicates our vision exactly. The National Gaucher Foundation’s Gaucher Network Registry is the first participant-powered Gaucher registry, providing those with Gaucher disease the opportunity to structure the record of their own individual disease experiences. It will empower individuals with Gaucher disease and their families with a means for using their health information to become proactive in improving the quality of their lives and instrumental in future research studies in the field.” JSRDF and NGF are among the nine organizations involved in the CENA project, which range from a focus on common chronic conditions to genetic and rare disorders. Together they have identified outcomes they hope to achieve by supporting patient-centered, data-focused clinical research. CENA is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is part of PCORnet: the National Patient-Centered Clinical Research Network. CENA also includes the University of California, San Francisco, and the University of California, Davis along with technology partner Private Access. CENAs partner organizations have built surveys using common data elements and validated instruments where possible, and are especially interested in the cross condition commonalities. They also working to integrate the common questions and data model of PCORnet to be research ready in 2015. CENA partners University of California, San Francisco and Davis are both engaged with these nine organizations in recruitment and design of research projects. “The collaboration among these organizations is remarkable. This cross condition registry requires both general and condition specific elements and these organizations are doing a great job learning together about the rigors of registries and the benefits of being able to study comorbidities, quality of life, and burden of disease together”, explained Sharon Terry, principal investigator of CENA and CEO of Genetic Alliance. The other seven condition advocacy organizations will all launch, or update, research registries in the next month. They are Alström Syndrome International, Association for X and Y Variations (AXYS, formerly KS&A), Dyskeratosis Congenita Outreach, Hepatitis Foundation International, Inflammatory Breast Cancer Research Foundation, MLD Foundation (metachromatic leukodystrophy), and PXE International (pseudoxanthoma elasticum). Like CENA on Facebook: facebook/cenaproject Follow on Twitter: @CENAProject
Posted on: Mon, 15 Sep 2014 16:10:23 +0000
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