| Title |
Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma: outcomes from a multicenter US-based systemic sclerosis registry
|
|---|---|
| Published in |
Clinical Rheumatology, October 2019
|
| DOI | 10.1007/s10067-019-04792-y |
| Pubmed ID | |
| Authors |
Victoria K. Shanmugam, Tracy M. Frech, Virginia D. Steen, Laura K. Hummers, Ami A. Shah, Elana J. Bernstein, Dinesh Khanna, Jessica K. Gordon, Flavia V. Castelino, Lorinda Chung, Faye N. Hant, Emily Startup, John M. VanBuren, Luke B. Evnin, Shervin Assassi |
| Abstract |
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. KEY POINTS : • 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. |
X Demographics
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Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 50% |
| Unknown | 1 | 50% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 1 | 50% |
| Scientists | 1 | 50% |
Mendeley readers
The data shown below were compiled from readership statistics for 10 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 10 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 2 | 20% |
| Student > Bachelor | 2 | 20% |
| Other | 1 | 10% |
| Student > Ph. D. Student | 1 | 10% |
| Student > Postgraduate | 1 | 10% |
| Other | 0 | 0% |
| Unknown | 3 | 30% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 3 | 30% |
| Pharmacology, Toxicology and Pharmaceutical Science | 2 | 20% |
| Nursing and Health Professions | 1 | 10% |
| Unknown | 4 | 40% |
Attention Score in Context
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Outputs of similar age from Clinical Rheumatology
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