Lupus registry offers online tool for sharing information about the disease
The Research.forME Lupus Registry was recently launched to give those living with lupus and their caregivers the opportunity to share their experiences and locate new information on research and treatments, the Lupus Foundation of America said in a release.
The registry also could improve patient-centered research through greater participation by individuals enrolled in the registry.
“The lack of valuable patient data is a significant challenge for researchers conducting lupus clinical trials,” Lupus Foundation of America Medical-Scientific Advisory Council Chair Gary Gilkeson said in the release. “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.”
Individuals who enroll in the registry complete a survey on their diagnosis, treatment and care. Researchers can use the information to learn about the issues faced by participants in the registry, including the progression of the disease and the average quality of life.
The registry is a part of the PCORI PARTNERS Patient Powered Research Network (PPRN). It will also include data on children and childhood rheumatic diseases.
“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,” Michael Jon Barlin Pediatric Research Program co-founder Judy Barlin said in the release. “I look forward to seeing families become more involved in research and the valuable role the Registry will play in that.”
To enroll in the registry, go to www.resources.lupus.org/entry/enroll-in-a-lupus-registry.
Organizations in this story
LUPUS Foundation of America 270 Farmington Avenue, Suite 218 West Hartford - 06032