Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma: outcomes from a multicenter US-based systemic sclerosis registry
Autor: | Faye N. Hant, Flavia V. Castelino, Laura K. Hummers, Shervin Assassi, Ami A. Shah, John M. VanBuren, Luke Evnin, Elana J. Bernstein, Dinesh Khanna, Tracy M. Frech, Virginia D. Steen, Lorinda Chung, Victoria K. Shanmugam, Emily Startup, Jessica K. Gordon |
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Rok vydání: | 2019 |
Předmět: |
Adult
Male Longitudinal study medicine.medical_specialty Adolescent Databases Factual Population Severity of Illness Index Article Scleroderma Pulmonary function testing Young Adult 03 medical and health sciences 0302 clinical medicine Rheumatology Disease severity medicine Humans Longitudinal Studies Patient Reported Outcome Measures Registries 030212 general & internal medicine skin and connective tissue diseases education Prospective cohort study Aged 030203 arthritis & rheumatology education.field_of_study Scleroderma Systemic integumentary system business.industry Raynaud Disease General Medicine Middle Aged medicine.disease United States Respiratory Function Tests Cohort Emergency medicine Female Self Report business Cohort study |
Zdroj: | Clin Rheumatol |
ISSN: | 1434-9949 0770-3198 |
Popis: | The Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma is a multicenter US-based longitudinal study of patients with systemic sclerosis (SSc) within 5 years of first non-Raynaud’s symptom. The data collection methodology incorporates successful models from other SSc registries. 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. The CONQUER registry was developed using the guidelines of the International Society for Biological Repositories, and was an iterative process between physicians with an expertise in SSc, patient stakeholders, and information technology experts. Enrollment commenced in June 2018. During the first 6 months of the CONQUER Scleroderma study, 151 SSc patients with less than 5 years of disease duration (from first non-Raynaud’s symptom) have been recruited. The mean age is 51 ± 14 years, 83% are female, and 60% of patients have diffuse disease. Survey completion rates are above 88% for all patient-reported outcome surveys. Bio-specimen collection rates are over 97%, and disease severity score completion rates are over 98%. Pulmonary function test data is available on 91% of patients, and echocardiography is available 80%. The CONQUER scleroderma study provides a unique and growing resource for studying scleroderma in a longitudinal, US-based population. • The Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma is a multicenter US-based longitudinal study of patients with systemic sclerosis (SSc) within 5 years of first non-Raynaud’s symptom. • The CONQUER scleroderma study provides a unique and growing resource for studying scleroderma in a longitudinal, US-based population. • CONQUER is innovative in its design in that it is focused on prospective collection of paired clinical and patient outcome data with bio-specimens. |
Databáze: | OpenAIRE |
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