Lupus Foundation of America Launches Online Lupus Registry
Research.forME™ Lupus Registry Allows Patients, Caregivers to Have Their Voice Heard in Research
The Lupus Foundation of America announced today the launch of the Research.forME™ Lupus Registry (Registry), an online data collection tool for people living with lupus and caregivers to share their experiences about the devastating and unpredictable disease.
The Registry, located at resources.lupus.org/registry, will help to inform the development of future clinical research and new lupus treatments, as well as provide valuable information about the impact of the disease on the individual and their loved ones who are affected by lupus.
“The lack of valuable patient data is a significant challenge for researchers conducting lupus clinical trials,” said Gary S. Gilkeson, M.D., chair of the Lupus Foundation of America Medical-Scientific Advisory Council. “With the Research.forME Lupus Registry, researchers will have access to a strong collection of data about people’s different experiences with lupus, and be able to match potential clinical trials based on this information. This will allow the lupus research community to produce more meaningful data, which will accelerate the development of new treatments and help to unravel the mysteries of lupus.”
The Registry is designed to serve as a multi-purpose resource for people with lupus, and has the potential to greatly improve patient-centered research participation. Participants in the Registry will be provided with information about relevant research studies and will have the ability to impact the development of future research questions.
Enrolling in the Registry consists of an individual completing a survey on lupus quality of life, diagnosis, treatment and care. This information will give researchers insight into the progression and potential environmental factors of lupus, the average quality of life, and how the disease affects different people.
As an integral part of the PCORI PARTNERS Patient Powered Research Network (PPRN), a network of research and advocacy organizations including Childhood Arthritis & Rheumatology Research Alliance (CARRA), the Arthritis Foundation, CureJM and a quality improvement network (PR-COIN), the Registry will include data on children and collect valuable information on the different childhood rheumatic diseases represented by the PPRN.
“The Registry will allow the Lupus Foundation of America to carry out the vision of the PCORI PARTNERS Patient Powered Research Network to improve the lives of children with rheumatic diseases through research that matters to children with lupus and their families in a real and tangible way,” said Judy Barlin, co-founder of the Michael Jon Barlin Pediatric Research Program. “I look forward to seeing families become more involved in research and the valuable role the Registry will play in that.”
To learn more and enroll in the Research.forME Lupus Registry, visit resources.lupus.org/registry.