Guideline-based registry shows value for studying systemic sclerosis
ATLANTA — Guideline-based registries designed by physicians, patients and information technology experts demonstrate high data completion and value, with the CONQUER registry specifically showing promise as a growing resource for studying systemic scleroderma in a longitudinal, U.S.-based population, according to data presented at the ACR/ARP 2019 Annual Meeting.
“This study reports data from the Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma, a multicenter US-based Systemic Sclerosis Registry,” Victoria Shanmugam, MBBS, MRCP, of George Washington University, told Healio Rheumatology. “The cohort is designed to provide linked bio-specimen and clinical outcomes data on a longitudinal cohort of SSc patients for validation of hypothesis driven research and to provide a platform for studying patient reported outcomes in scleroderma.”
To determine the impact of guideline-based registry practices on the quality of a database after six months, Shanmugam and colleagues studied data from CONQUER, a multicenter longitudinal study based in the United States of patients with SSc within 5 years of their first non-Raynaud’s symptom.
CONQUER was developed using International Society for Biological Repositories guidelines, through the work of 13 SSc experts, patient representatives and information technology specialists. Part of their goal was to ensure minimal missing data across 775 fields of data element. Its overall aim is to provide linked biospecimen and clinical outcomes data on a longitudinal cohort of patients with SSc to validate hypothesis-driven research, and to provide a platform for evaluating patient-reported outcomes.
In its first 6 months, the CONQUER study recruited 151 patients with SSc with less than 5 years of disease duration. According to the researchers, survey completion rates are above 88% for all patient-reported outcome surveys. In addition, biospecimen collection rates are at more than 97%, with completion rates for disease severity score at more than 98%.
“Rare disease clinical care registries are powerful tools for clinical and translational research,” Shanmugam said. “The CONQUER scleroderma registry was designed in order to develop a U.S. validation cohort for scleroderma research. While only in its infancy, the power of this registry lies within its investigators, study participants, patient partners, and the unique integration of clinical outcome data, patient outcome data and serial bio-specimens. Capturing PRO data while minimizing patient burden is a unique feature of the CONQUER registry and integration of these unique features offers a novel and robust tool for future discovery in the field of scleroderma.” – by Jason Laday
Shanmugam V. Abstract #1647. The Collaborative National Quality and Efficacy Registry for Scleroderma: Data collection outcomes from a multicenter United States cohort using guideline-based registry practices. Presented at: American College of Rheumatology/Association of Rheumatology Professionals Annual Meeting; Nov. 9-13, 2019; Atlanta.