The
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 info@srfcure.org or call us at 800.441.CURE (2873).

CONQUER Sites

Columbia University, New York

Principal Investigator: Elana Bernstein, MD, MSc
Primary Contact Person: Niki Pradhan, Research Coordinator
np2749@cumc.columbia.edu
212.342.6815

Duke University, North Carolina

Principal Investigator: Ankoor Shah, MD
Primary Contact Person: Karissa Grier, Research Coordinator
karissa.grier@duke.edu

Georgetown University, Washington, D. C.

Principal Investigator: Virginia Steen, MD
Primary Contact Person: Peyton Murray, Research Coordinator
pm1141@georgetown.edu

Hospital for Special Surgery, New York

Principal Investigator: Jessica Gordon, MD
Primary Contact Person: Kaitlin Schultz, Research Assistant
schultzk@hss.edu
212.774.7620

Johns Hopkins University, Maryland

Principal Investigators: Ami Shah, MD and Laura Hummers, MD
Primary Contact Person: Adrianne Woods, Research Coordinator
awoods9@jhmi.edu
410.550.6820

Mass General Hospital, Massachusetts

Principal Investigator: Flavia Castelino, MD
Primary Contact Person: Alexandra Poeschla, Research Coordinator
apoeschla@mgh.harvard.edu
507.923.0814

Mayo Clinic, Minnesota

Principal Investigator: Ashima Makol, MD
Primary Contact Person: Jenni Sletten, Research Coordinator
Sletten.Jennifer@mayo.edu
507.284.4797

Medical University of South Carolina

Principal Investigator: Faye Hant, DO, MSCR
Primary Contact Person: Brittany Frasier, Research Coordinator
frasibri@musc.edu

Northwestern University, Illinois

Principal Investigator: Carrie L. Richardson, MD
Primary Contact People:
Kathleen Aren, Research Coordinator
kathleen.aren@northwestern.edu

Alexandra Soriano, Research Coordinator
alexandra.soriano@northwestern.edu

312.503.1120

Stanford University, California

Principal Investigator: Lori Chung, MD, MS
Primary Contact Person: Swarna Nandyala, Research Coordinator
swarnan@stanford.edu

The University of Texas Health Science Center at Houston

Principal Investigator: Shervin Assassi, MD
Primary Contact Person: Samuel Theodore, Research Coordinator
samuel.theodore@uth.tmc.edu

University of California, Los Angeles

Principal Investigator: Elizabeth Volkmann, MD, MS
Primary Contact Person: Nancy R. Lopez, Research Coordinator
NancyRLopez@mednet.ucla.edu

University of Michigan

Principal Investigator: Dinesh Khanna, MD
Primary Contact People:
Danielle Ochocki, Research Coordinator
dochocki@med.umich.edu

Rosemary Gedert, Research Coordinator
rgedert@med.umich.edu

Riley Bennett
rileybe@med.umich.edu

University of Minnesota

Principal Investigator: Jerry Molitor, MD
Primary Contact Person: Ben Teng, Research Coordinator
tang0266@umn.edu
612.624.5617

University of Pennsylvania

Principal Investigator: Nora Sandorfi, MD
Primary Contact People:
Lauren Baker, Research Coordinator
Lauren.Baker@Pennmedicine.upenn.edu

Lizzy Robinson, Research Coordinator
Elizabeth.Robinson@Pennmedicine.upenn.edu

215.614.4430

University of Utah

Principal Investigator: Tracy Frech, MD
Primary Contact Person: Inge Stijleman, Research Coordinator
inge.stijleman@hsc.utah.edu
801.213.1368

Vanderbilt University Medical Center, Tennessee

Principal Investigator: Tracy Frech, MD
Primary Contact Person: Sarah Wood, Research Coordinator
sarah.wood@vumc.org
615.322.3635

WEBINAR SERIES

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​.

Still Want More Information About Conquer?

OUR RESEARCH

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