By making patient registries freely available to any disease community and sharing this data openly, we continue to spur collaborative research efforts like LD Connect that can change people’s lives.
San Mateo, CA (PRWEB) March 04, 2014
PatientCrossroads, Lipodystrophy United and international disease experts have launched the Lipodystrophy Connect (LD Connect) patient registry program to learn more about lipodystrophy by collecting information directly from patients. The data will be made broadly available to researchers to speed the search for treatments and to raise the awareness of this rare disorder. AstraZeneca is a sponsor of this program.
Researchers need population and disease data on lipodystrophy, a rare condition that causes a loss of fat tissue. No one knows exactly how many people are affected by lipodystrophy worldwide, and clinical endpoints that could gauge the effectiveness of treatments are sparse. LD Connect aims to collect more information, directly from patients, than any single researcher could collect on his or her own. The de-identified data is shared with lipodystrophy researchers who may also suggest additional information to collect from the community.
“For a small investment of time, patients can provide a wealth of knowledge to researchers,” says Andra Stratton, President of Lipodystrophy United. “LD Connect empowers patients and families to help make a difference that can be felt around the world.” Participants can choose to receive announcements about research studies or other opportunities, further connecting patients to the medical research community.
LD Connect is committed to connecting with Lipodystrophy patients globally and is collaborating with European researchers and advocacy groups to ensure this resource is available worldwide. “The success of the patient registry will be dependent on international patient participation and we are excited to contribute to this important program,” said Dr. David Arujo-Vilar, a leading lipodystrophy researcher at Universidad de Santiago de Compostela and founder of the Spanish Society of Lipodystrophies.
LD Connect utilizes the PatientCrossroads CONNECT registry platform in which patient advocacy groups promote the registry and encourage patients to contribute their information via secure online health surveys. PatientCrossroads medical staff reviews the patient provided information for completeness and accuracy and controls access to the data. PatientCrossroads is responsible for all aspects of the program, acting at the direction of the LD Connect Governance Board comprised of patient advocates, international researchers, and representatives of industry and government.
“LD Connect brings together patients, leading international researchers and a pharmaceutical company to find treatments for this rare disease” said Kyle Brown, founder of PatientCrossroads, “PatientCrossroads has long advocated for open access to patient provided medical histories. By making patient registries freely available to any disease community and sharing this data openly, we continue to spur collaborative research efforts like LD Connect that can change people’s lives.”
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy as the recipient of an NIH Merit Group Award. PatientCrossroads also is the only full U.S. based partner in the European Union FP7 funded RD-CONNECT program, which supports the international goal of developing 200 therapeutics for rare diseases by 2020. For more information, visit http://www.patientcrossroads.com.