Roberto Caricchio, MD, the Myles J. McDonough Chair in Rheumatology, professor of medicine and chief of the Division of Rheumatology in the Department of Medicine, received a $1.2 million award from Lupus Research Alliance to support the development of a biorepository and registry at the Lupus Center at UMass Chan Medical School.
“This funding is not only a recognition of my commitment to lupus, but also recognizes that UMass Chan has a center where lupus patients receive advanced care and are followed in a collaborative effort by a rheumatologist, a nephrologist and a dermatologist. By that definition, we are a place that can ensure that the patients are enrolled properly and samples are stored appropriately,” said Dr. Caricchio, co-director of the Lupus Center.
The Lupus Research Alliance and its clinical research affiliate Lupus Therapeutics launched the Lupus Landmark Study and the nationwide collaborative research biorepository, Lupus Nexus, in 2023. UMass Chan is one of the first seven sites to participate. Caricchio and his team at the Lupus Center began enrolling patients in late October, with a goal of enrolling 35 a year. Nationally, the repository aims to enroll and follow 3,500 patients over five years.
“Lupus is a very diverse disease from a clinical point of view and from a human point of view. Unfortunately, many lupus patients don’t respond to approved medications. We need to take care of those patients and understand why they’re not responding to treatment. That’s why these biorepositories are so important,” Caricchio said.
More than 20 sites across the country are expected to participate in the Lupus Nexus. Caricchio was involved in the design of the biorepository and said the goal is to enroll enough patients to provide sufficient material for scientists and clinical investigators to pursue projects that result in a fuller understanding of the complex disease and to a cure.
Enrolled patients will include those recently diagnosed with lupus as well as patients who are experiencing lupus flares, when their symptoms might be at their worst.
Toward a goal of generating a significant number of patient-reported outcomes and better understanding lupus from a patient’s perspective, patients will be asked to fill out questionnaires to share with clinicians about how they’re feeling at home, rather than just how they’re feeling during their clinical appointments. Additionally, patients will be asked to provide blood and urine samples.
“The samples will be processed in a way that makes it possible to utilize them with technologies that we cannot predict today,” Caricchio said. “The biorepository has been designed so the samples can be simply but appropriately stored so that they can last many decades.”
