September 16, 2026

Shape The Future of CIDP Research

Study Title

The Chronic Inflammatory Demyelinating Polyneuropathy-Health Index (CIDP-HI): Development of a Patient-Reported Outcome Measure for Chronic Inflammatory Demyelinating Polyneuropathy

Principal Investigator

Chad Heatwole, MD, MS-CI

Study Details

Researchers at the University of Rochester Medicine Center for Health + Technology (CHeT) are interested in creating a patient-reported outcome measure that will assess the health, symptoms, and disease burden of individuals with chronic inflammatory demyelinating polyneuropathy (CIDP). This study is being conducted by Dr. Chad Heatwole from the University of Rochester’s Department of Neurology. This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with CIDP. This will help guide future research involving individuals with CIDP.

Who can participate:
  • Be 18 years old or older
  • Be diagnosed with CIDP
  • Reside in any country except those where participation is restricted due to specific regulatory and operational constraints (Belarus, Iran, North Korea, Russia, and Ukraine).
  • Read and understand English
What’s involved:

The study involves completing demographic questions and an online survey asking about the symptoms of CIDP you experience. The survey will take approximately 20-30 minutes to complete, and you may skip any questions that you do not wish to answer. All responses will be strictly anonymous.

How to participate:

Interested individuals can click the link below to participate:
https://redcap.link/cidp-hi

Any questions or comments may be directed to one of the study coordinators:
Matt Rathbun, MPH
Email: Matthew_Rathbun@URMC.Rochester.edu
Phone: +001 (585) 275-8585
Marissa Moore, BS
Email: Marissa_Moore@URMC.Rochester.edu
Phone: +001 (585) 275-8911


Thank you for considering participating in this important study.

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