What is the CONQUER Registry?
In 2018, The Scleroderma Research Foundation launched the CONQUER Registry (an acronym for COllaborative National QUality and Efficacy Registry) a first-of-its-kind nationwide longitudinal scleroderma patient registry and biosample repository aimed at improving care and developing more effective, personalized therapies for systemic sclerosis (scleroderma) patients. Scleroderma can manifest in many different ways.
Why is the CONQUER Registry needed?
Some patients have fibrotic skin disease while others do not. Some patients have lung disease, heart disease, or gastrointestinal disease while other patients have many affected organs. Why is this and why is it so difficult for physicians to predict an individual patient's disease course? Similarly, scleroderma patients need and are treated with many different therapies that span from simply monitoring the disease coupled with symptomatic therapy (e.g. H2 blockers and PPIs for heartburn/reflux) all the way to aggressive therapy aimed at modifying their underlying disease, such as chemotherapeutic immune system resetting with autologous stem cell rescue.
How The CONQUER Registry Works: