Scleroderma Registry Valuable in Studying Systemic Disease
The Collaborative National Quality and Efficacy Registry (CONQUER) for scleroderma, or systemic sclerosis, is a powerful tool in guiding research and treatment development for the disease, according to a study published in the journal Clinical Rheumatology.
Scleroderma is a rare autoimmune disease affecting between four and 489 people per every one million. The disease is characterized by excessive production and accumulation of collagen in the skin and internal organs.
The study, authored by Victoria Shanmugam, MD, director of the Division of Rheumatology and associate professor of medicine at the George Washington University School of Medicine and Health Sciences, presents preliminary data from the CONQUER scleroderma registry focusing on data quality, the characteristics of the data set, and the registry’s potential for scleroderma clinical and translational discovery work.
“The CONQUER scleroderma study provides a unique and growing resource for studying scleroderma in a longitudinal, U.S.-based population,” Shanmugam said. “The management of scleroderma is complex and evolving. This study is a unique collaboration between the Scleroderma Research Foundation and multiple academic centers focused on building a robust repository of data and specimens, which will grow as the field evolves.”
One of the strengths the authors identified in the registry is its focus on inclusion of prospectively collected patient-reported outcome data paired with clinical outcome data. The article also acknowledges the valuable role standardized protocols for biospecimen collection and storage will play for future scleroderma research. Those processes will allow studies conducted through the registry to be reinforced by validated patient-centered outcome data.
“Rare disease clinical care registries are powerful tools for clinical and translational research when developed using standardized methods that adhere to a quality framework,” said Shanmugam. “The CONQUER scleroderma registry has integrated the lessons learned and recommendations made from other scleroderma registries in order to develop a U.S. validation cohort.”
To view the article, “Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma: Outcomes from a Multicenter U.S.-based Systemic Sclerosis Registry,” visit link.springer.com/article/10.1007%2Fs10067-019-04792-y.