ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 1647

The Collaborative National Quality and Efficacy Registry for Scleroderma: Data Completion Outcomes from a Multicenter United States Cohort Using Guideline-Based Registry Practices

Victoria Shanmugam1, Tracy Frech 2, Virginia Steen 3, Laura Hummers 4, Ami Shah 5, Elana Bernstein 6, Dinesh Khanna 7, Jessica Gordon 8, Flavia Castelino 9, Lorinda Chung 10, Faye Hant 11, Emily Startup 12, John VanBuren 12, Luke Evnin 13 and Shervin Assassi 14, 1George Washington University, Georgetown, DC, 2Division of Rheumatology, University of Utah and Salt Lake VAMC, Salt Lake City, UT, 3Georgetown University, Washington, D.C., USA, Georgetown, 4Johns Hopkins University School of Medicine, Division of Rheumatology, Baltimore, MD, USA, Baltimore, MD, 5Johns Hopkins Hospital, Baltimore, MD, 6Division of Rheumatology, Columbia University, New York, NY, 7Department of Medicine, University of Michigan, Ann Arbor, Michigan, USA, Ann Arbor, 8Hospital for Special Surgery, New York, NY, 9Harvard University, Boston, MA, 10Stanford University, Palo Alto, CA, 11Medical University of South Carolina, Charleston, SC, 12University of Utah, Salt Lake City, UT, 13Scleroderma Research Foundation, San Francisco, CA, 14Division of Rheumatology and Clinical Immunogenetics, University of Texas McGovern Medical School, Houston, Texas, USA, Houston, TX

Meeting: 2019 ACR/ARP Annual Meeting

Keywords: , , ,

Session Information

Date: Monday, November 11, 2019

Title: Systemic Sclerosis & Related Disorders – Clinical Poster II

Session Type: Poster Session (Monday)

Session Time: 9:00AM-11:00AM

Background/Purpose: 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. Supported by the Scleroderma Research Foundation, CONQUER 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. The purpose of this analysis was to assess the effectiveness of guideline-based registry practices on database quality at 6 months.

Methods: The CONQUER registry was developed using the guidelines of the International Society for Biological Repositories. It was an iterative process between 13 physicians with an expertise in SSc, patient stakeholders, and information technology experts to ensure there is minimal missing data in 775 fields of data elements.

Results: 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) were recruited. The mean age is 51 ± 14 years, 83% are female and 60% of patients have diffuse disease. Data completion is shown in Table 1. 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%.

Conclusion: As demonstrated by data completion, the CONQUER study demonstrates the value of guideline-based registries that are designed by physicians, patients, and information technology experts. CONQUER is a unique and growing resource for studying SSc in a longitudinal, US-based population.

CONQUER Data Completion

Disclosure: V. Shanmugam, AbbVie, 2; T. Frech, None; V. Steen, Boehringer Ingelheim, 5, Corbus, 5, 9, CSL, 5, 9, CSL Behring, 2, 5, DSMB, 5, 9, Galapagos, 5, 9; L. Hummers, Boehringer Ingelheim, 2, 5, Boehringer-Ingelheim, 2, 5, Corbus, 2, Corbus Pharmacueticals, 2, CSL Behring, 5, Cumberland, 2, Cumberland Pharmaceuticals, 2, Cytori, 2, Cytori Therapeutics, 2, GlaxoSmithKline, 2; A. Shah, Bristol Meyer Squibb, 5, Bristol-Myers Squibb, 5; E. Bernstein, None; D. Khanna, Acceleron, 5, 8, Acceleron Pharma, 5, Actelion, 5, 8, Actelion Pharmaceuticals, 5, Astra Zeneca, 5, Bayer, 2, 5, 8, Behring, 5, Blade, 5, Blade Therapeutics, 5, 8, Blade therapeutics, 5, BMS, 2, 5, 8, Boehringer Ingelham, 5, Boehringer Ingelheim, 5, 8, Boehringer-Ingelheim, 5, Bristol Myers Squibb, 2, 5, Bristol-Myers Squibb, 2, 5, Celegene, 5, Celgene, 5, 8, ChemomAB, 5, ChemomAb, 5, CiviBioPharma, Inc., 3, Corbus, 5, Corobus, 5, Corpus, 5, CSL Behring, 5, 8, Curizon, 5, Curzion, 5, Cytori, 5, 8, Eicos, 4, Eicos Sciences, 4, Eicos Sciences, Inc, 4, Eicos Sciences, Inc/ CiviBioPharma, Inc, 1, 4, Eicos Sciences, Inc/ CiviBioPharma, Inc., 1, Eicos, Inc, 4, Eicos, Inc., 5, 8, Eicos, INC., 4, Galapagos, 5, Genentech, 5, Genentech/Roche, 5, GlaxoSmithKline, 5, GSK, 5, Horizon, 2, 5, Mitsubishi Tanabe Pharma, 5, Mitsubishi Tanabe Pharma Dev America, 5, Mitsubishi Tanabe Pharma Development America, 5, Mitsubishi Tanabi, 5, NIH K24 and R01, 2, NIH / NIAMS K24 AR-063120, 2, NIH/NIAMS R01& K24, 2, Pfizer, 2, 5, Sanofi, 5, Sanofi Aventis, 5, Sanofi-Aventis, 5, 8, Sanofi-Aventis/Genzyme, 5, UCB, 5, UCB Pharma, 5; J. Gordon, Corbus, 2, Corbus Pharmaceuticals, 2, Cumberland, 2, Cumberland Pharmaceuticals, 2, Elcos, 2; F. Castelino, Boehringer-Ingelheim, 5, Corbus, 9, Cumberland, 9, Galapagos, 9, Scleroderma Research Foundation, 2; L. Chung, BMS, 6, 9, Boehrenger-Ingelheim, 5, Boehringer Ingelheim, 5, Boehringer-Ingelheim, 5, Bristol-Myers Squib, 5, Eicos, 5, 6, 9, Eicos Steering Committee, 5, Mitsubishi Tanabe, 5, Reata, 5, 6, Reata DSMB, 5, Reatta, 5; F. Hant, None; E. Startup, None; J. VanBuren, None; L. Evnin, None; S. Assassi, Bayer, 2, Boehringer Ingelheim, 2, 5, 8, Integrity Continuing Education, 8, 9, Medscape, 8, 9, Momenta, 2.

To cite this abstract in AMA style:

Shanmugam V, Frech T, Steen V, Hummers L, Shah A, Bernstein E, Khanna D, Gordon J, Castelino F, Chung L, Hant F, Startup E, VanBuren J, Evnin L, Assassi S. The Collaborative National Quality and Efficacy Registry for Scleroderma: Data Completion Outcomes from a Multicenter United States Cohort Using Guideline-Based Registry Practices [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/the-collaborative-national-quality-and-efficacy-registry-for-scleroderma-data-completion-outcomes-from-a-multicenter-united-states-cohort-using-guideline-based-registry-practices/. Accessed .

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