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 email@example.com or call us at 800.441.CURE (2873).
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.