Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma: outcomes from a multicenter US-based...

Area of Science:

• Rheumatology and Immunology
• Clinical Research Methodology
• Biorepository Science

Background:

• Systemic sclerosis (SSc) is a complex autoimmune disease requiring robust research infrastructure.
• Existing SSc registries provide valuable data, but a US-based longitudinal cohort with linked biospecimens is needed.
• Early-stage SSc research benefits from comprehensive, prospective data collection.

Purpose of the Study:

• To establish the Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma, a multicenter, US-based longitudinal study.
• To collect linked clinical outcomes, patient-reported outcomes, and biospecimens from early SSc patients.
• To create a platform for hypothesis-driven research and validation in scleroderma.

Main Methods:

• Recruited 151 systemic sclerosis patients within 5 years of symptom onset.
• Implemented data collection methodologies from established SSc registries.
• Ensured high completion rates for patient-reported outcomes (>88%), biospecimen collection (>97%), and clinical data (e.g., PFTs 91%, echo 80%).

Main Results:

• Successfully enrolled 151 early systemic sclerosis patients in the first 6 months.
• Achieved high adherence to data collection protocols, indicating feasibility and patient engagement.
• Established a cohort with detailed demographics: mean age 51, 83% female, 60% diffuse disease.

Conclusions:

• The CONQUER Scleroderma registry is a unique and growing resource for studying systemic sclerosis in a US-based population.
• The registry's design facilitates longitudinal research by integrating clinical, patient-reported, and biospecimen data.
• CONQUER provides a valuable platform for advancing scleroderma research and improving patient outcomes.