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PROMIS as a novel patient reported outcome (PRO) tool in adult patients with congenital blood disorders

Clinical Trial Details

The purpose of this study is to evaluate a new type of patient-reported outcome tool that can be completed on an electronic device and will provide information about the quality of your life and health as it relates to your disease. We hope to learn about the natural history of congenital blood disorders and how they affect your life. 
This research study is being done because there is a need for improved understanding of quality of life in patients living with your condition, and we do not know which tools are best for determining this. 

Key Eligibility: 

Open to men and women 18 and older who have been diagnosed with a congenital disorder of your blood. 

Study contact by location

Upper East Side - Manhattan


Arelys M. Rocha
(212) 746-3423

Primary Investigator(s)

Protocol ID(s)

Weill Cornell Medicine IRB #:



Open to Enrollment

Age Group