The CONQUER RegistryRegistry

At the Scleroderma Research Foundation, research is at the center of all we do.

What is CONQUER?


In 2018, The SRF launched the CONQUER Registry (an acronym for COllaborative National Quality and Efficacy Registry) – a first-of-its-kind nationwide patient registry and biosample repository aimed at improving care and developing more effective, personalized therapies for systemic sclerosis (scleroderma) patients.

CONQUER was created through a collaborative effort among the largest scleroderma centers in the U.S. With the goal of enrolling thousands of scleroderma patients from around the country, researchers and clinicians will be able to learn as much as possible about all forms of scleroderma in patients of all backgrounds and ethnicities, and use that knowledge to advance research and discovery.

How the CONQUER Registry Works

  • Scleroderma patients participate through their routine clinical visits (2x/year), contributing Clinical data & Blood samples
  • Patients also contribute data through Patient-Reported Outcome surveys. (This can be done at the patient’s convenience.)
  • Enrolled Patients receive the most modern standard of care. There are no experimental therapies involved in CONQUER.

Who is Eligible?

To be eligible for CONQUER, the national scleroderma patient registry, you must:

  • Be 18 years of age or older
  • Have systemic scleroderma
  • Be within first 5 years of first non-Raynaud’s symptom (Enrollment is time sensitive)
  • You can participate in CONQUER even if you are enrolled in another registry.

CONQUER will benefit every scleroderma patient, even those unable to enroll.

How Do I Participate in CONQUER?

  • The 17 institutions listed below are the sites participating in the CONQUER REGISTRY Project.
  • We do anticipate that other expert sites will be added over time and are in the process of evaluating such additions now. If you are a patient at one of these participating centers, ask your doctor about enrolling in CONQUER.
  • Otherwise, please contact the Scleroderma Research Foundation at or call us at 800.441.CURE (2873).


Columbia University, New York

Principal Investigator: Elana Bernstein, MD, MSc
Primary Contact People:
Niki Pradhan, Research Coordinator

Megan Santilli, Research Coordinator


Duke University, North Carolina

Principal Investigator: Ankoor Shah, MD
Primary Contact People:
Karissa Grier, Research Coordinator

Edna Scarlett, Research Coordinator

Georgetown University, Washington, D. C.

Principal Investigator: Virginia Steen, MD
Primary Contact Person: Destiny Barksdale, Research Coordinator

Hospital for Special Surgery, New York

Principal Investigator: Jessica Gordon, MD
Primary Contact Person: Mia Diaz, Research Assistant


Johns Hopkins University, Maryland

Principal Investigators: Ami Shah, MD and Laura Hummers, MD
Primary Contact People:
Adrianne Woods, Research Coordinator

Gwen Leatherman, Research Coordinator


Mass General Hospital, Massachusetts

Principal Investigator: Flavia Castelino, MD
Primary Contact Person: Ali Puri, Research Coordinator


Mayo Clinic, Minnesota

Principal Investigator: Ashima Makol, MD
Primary Contact People:
Jenni Sletten, Research Coordinator

Patty Kennedy, Research Coordinator


Medical University of South Carolina

Principal Investigator: Faye Hant, DO, MSCR
Primary Contact Person: Brittany Frasier, Research Coordinator

Northwestern University, Illinois

Principal Investigator: Carrie L. Richardson, MD
Primary Contact People:
Kathleen Aren, Research Coordinator

Alexandra Soriano, Research Coordinator

Mary Carns, Research Coordinator


Stanford University, California

Principal Investigator: Lori Chung, MD, MS
Primary Contact Person: Swarna Nandyala, Research Coordinator

The University of Texas Health Science Center at Houston

Principal Investigator: Shervin Assassi, MD
Primary Contact People:
Samuel “Sam” Theodore, Research Coordinator

Maya Washington, Research Coordinator

University of California, Los Angeles

Principal Investigator: Elizabeth Volkmann, MD, MS

University of Michigan

Principal Investigator: Dinesh Khanna, MD
Primary Contact People:
Rosemary Gedert, Research Coordinator

James St. Clair, Research Coordinator

Amisha Kaur, Research Coordinator

Neda Kortam, Research Coordinator

University of Minnesota

Principal Investigator: Jerry Molitor, MD
Primary Contact People:
Ben Tang, Research Coordinator

Sena Andea, Research Coordinator


University of Pennsylvania

Principal Investigator: Nora Sandorfi, MD
Primary Contact People:
Lauren Baker, Research Coordinator

Wren Catrillo, Research Coordinator

Paris Mitchell, Research Coordinator

Sally Thompson, Research Coordinator


University of Utah

Principal Investigator: Dorota Lebiedz-Odrobina, MD
Primary Contact People:
Inge Stijleman, Research Coordinator

Sally Bradstreet, Research Coordinator


Vanderbilt University Medical Center, Tennessee

Principal Investigator: Tracy Frech, MD
Primary Contact Person: Sarah Wood, Research Coordinator



Learn About CONQUER

Watch an informative webinar explaining the importance of the CONQUER Registry and how it could lead to finding a cure.

Watch the Webinar

How Does My Data Get Used, and Is It Protected?

  • Your clinical data and blood samples will be de-identified so no one can get personal information about you.
  • CONQUER data is protected in a secure data center at the University of Utah. This Data Coordinating Center (DCC), based at the University of Utah School of Medicine, provides a central repository for data generated by each of the CONQUER sites. The DCC also works with each of the CONQUER Principal Investigators and Research Coordinators to implement CONQUER-wide standards for data collection and analysis in order to ensure uniformity and quality of the data. The DCC implements regular monitoring activities and performs statistical analyses for many manuscripts published on behalf of CONQUER.
  • CONQUER blood samples are stored separately at the University of Texas-Houston – the largest biorepository of scleroderma samples in the world

What is the Benefit to Me?

  • Your participation will help accelerate advances in clinical care
  • This registry supports the development of new therapies​
  • Patients enrolled in CONQUER will experience heightened scrutiny and care in a formal setting
  • In the future, CONQUER will include a clinical trials platform for rapid testing of new drugs and enrolled patients may be eligible to participate in these trials​.

What Have We Learned From CONQUER So Far?

Researchers have already published papers based on analysis of CONQUER data.

Collaborative National Quality and Efficacy Registry (CONQUER) for Scleroderma: Outcomes from a Multicenter US-based Systemic Sclerosis Registry (2020)

By: 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

View Article

Does hand involvement in Systemic Sclerosis limit PRO completion? (2021)

By: Tracy M. Frech, John M. VanBuren, Emily Startup, Shervin Assassi, Elana J. Bernstein, Flavia V. Castelino, Lorinda Chung, Chase Correia, Jessica K. Gordon, Faye N. Hant, Laura Hummers, Dinesh Khanna, Nora Sandorfi, Ami A. Shah, Victoria K. Shanmugam, Virginia Steen & Luke Evnin

Summary: The objective of this analysis is to examine whether the severity of systemic sclerosis (SSc)-hand involvement influences patient-reported outcome measure (PROM) completion rate. There were 339 CONQUER participants with total of 600 baseline and follow-up visits available for analysis. Fingertip resorption (acro-osteolysis) and calcium deposits (calcinosis) were associated with lower PROM completion, independent of the length of the questionnaires or the modality of administration (electronic or paper). Multiple strategies are needed to ensure optimal completion of PROM in longitudinal cohort studies.

View Article

Baseline Characteristics of Systemic Sclerosis Patients with Restrictive Lung Disease in a Multi-Center US Based Longitudinal Registry (2022)

By: Flavia V. Castelino, John M. VanBuren, Emily Startup, Shervin Assassi, Elana J. Bernstein, Lorinda Chung, Chase Correia, Luke B. Evnin, Tracy M. Frech, Jessica K. Gordon, Faye N. Hant, Laura K. Hummers, Dinesh Khanna, Nora Sandorfi, Ami A. Shah, Victoria K. Shanmugam, Virginia Steen

Summary: The researchers looked at the various characteristics associated with restrictive lung disease (RLD) in patients enrolled in CONQUER. There were no differences in age, gender or disease duration. Patients with restrictive lung disease had a mean disease duration of 2.6 years. Non-white race, higher physician global health assessment scores and dyspnea scores were independently associated with RLD. Interestingly, 45% of CONQUER participants already had RLD, highlighting the importance of screening for lung disease at initial diagnosis of systemic sclerosis.

View Article

Computed Tomography of the Chest to Screen for Interstitial Lung Disease in Patients with Systemic Sclerosis at Expert Scleroderma Centers in the U.S. (2022)

By: Elana J. Bernstein, Shervin Assassi, Flavia V. Castelino, Lorinda Chung, Chase Correia, Luke B. Evnin, Tracy M. Frech, Jessica K. Gordon, Brian A. Skaug, Faye N. Hant, Laura K. Hummers, Nora Sandorfi, Ami A. Shah, Victoria K. Shanmugam, Virginia D. Steen, Dinesh Khanna

Summary: Although a chest CT scan is the gold standard test for the diagnosis of interstitial lung disease, there is no consensus among rheumatologists regarding the use of chest CT to screen for interstitial lung disease in their patients with systemic sclerosis. The goal of this study was to describe the chest CT ordering practices at expert scleroderma centers in the United States and to determine which patient characteristics are associated with obtaining a chest CT. The researchers found that 80% of systemic sclerosis patients enrolled in CONQUER underwent a chest CT. Patients with a positive centromere antibody were less likely to have undergone a chest CT.

View Article

CONQUER Scleroderma: Association of Gastrointestinal Tract Symptoms in Early Disease with Resource Utilization (2023)

By: Sarah Luebker, Tracy M Frech, Shervin Assassi, Brian Skaug, Jessica K Gordon, Kimberly Lakin, Elana J Bernstein, Yiming Luo, Virginia D Steen, Ami A Shah, Laura K Hummers, Carrie Richardson, Duncan F Moore, Dinesh Khanna, Flavia V Castelino, Lorinda Chung, Puneet Kapoor, Faye N Hant, Victoria K Shanmugam, John M VanBuren, Jessica Alvey, Monica Harding, Ankoor Shah, Ashima Makol, Dorota Lebiedz-Odrobina, Julie K Thomas, Elizabeth R Volkmann, Jerry A Molitor, Nora Sandorfi

Summary: This report from the CONQUER cohort looked at how gastrointestinal tract (GIT) symptoms impacts health-related costs of care. Among the 211 CONQUER participants in this study, most (64%) had mild GIT symptoms, 26% had moderate symptoms, and 10% severe GIT symptoms at 12-months of follow-up. More upper endoscopy procedures and inpatient hospitalization occurred in the CONQUER participants with severe GIT symptoms. It is especially important to understand symptom activity prior to damage to the GIT and how diagnosis increases care costs.

View Article

The Collaborative National Quality and Efficacy Registry for Scleroderma: Association of Medication Use on Gastrointestinal Tract Symptoms in Early Disease and the Importance of Tobacco Cessation (2023)

By: S. Luebker, T.M. Frech, S. Assassi, J.K. Gordon, E.J. Bernstein, V.D. Steen,
A.A. Shah, L.K. Hummers, C. Richardson, D. Khanna, F.V. Castelino1, L. Chung, F.N. Hant, V.K. Shanmugam, J.M. VanBuren, J. Alvey, M. Harding, N. Sandorfi

Summary: This manuscript presents the gastrointestinal tract (GIT) outcomes in relation to other scleroderma manifestations and medication exposures. 415 enrolled CONQUER participants were included in this analysis. Most participants had stable mild GIT symptoms at baseline and were prescribed immunosuppression and anti-heartburn therapy. In most patients, anti-reflux medication and immunosuppression initiation preceded the baseline visit, whereas anti-fibrotic initiation occurred at or after the baseline visit. There was no clear association between immunosuppression or anti-fibrotic use and severity of GIT symptoms. However, active tobacco use was associated with worse GIT symptoms, highlighting the importance of smoking cessation counselling.

Download Article

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