The Lupus Foundation of America has started an online platform where patients can provide information about their lives that researchers can use.
It will help patients as well as researchers understand lupus better, the foundation said.
The Research.forME Lupus Registry will collect patients’ observations about caregivers’ experiences as well. The information will raise awareness of how the disease impacts patients and caregivers, and help researchers develop new studies and therapies.
Those who join the registry will have access to studies that have already been completed and a chance to impact the direction of future studies.
There is a screening process for the registry to ensure that those who join fit a lupus profile. The first step in joining is completing an online survey. It includes questions on patients’ diagnosis, treatment and care, and how lupus impacts their quality of life. Once they join the registry, patients will be asked to participate in other surveys.
The registry will provide researchers with information on environmental factors that may cause lupus, the disease’s progression, patients’ quality of life, and how lupus affects different people. It will include information on children with rheumatic diseases as well.
“The lack of valuable patient data is a significant challenge for researchers conducting lupus clinical trials,” Dr. Gary S. Gilkeson, chair of the foundation’s Medical-Scientific Advisory Council, said in a news 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.”
The registry will help integrate advocacy, research, and quality improvement efforts. Its results will be available to the umbrella research and advocacy organization PCORI PARTNERS Patient Powered Research Network, for example. Advocacy organizations in the network include the Arthritis Foundation, CureJM, and the Childhood Arthritis & Rheumatology Research Alliance. Results also will be available to the PR-COIN quality improvement network.
“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.”
You’ll find the registry at resources.lupus.org/registry.