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Relapsing Polychondritis Foundation and Race for RP Support Researchers’ Efforts to Develop Classification Patient-Reported Symptoms Survey

Update – April 23, 2020

Thank you to the over 600 RP patients who generously participated in the relapsing polychondritis (RP) patient-reported symptoms survey, which is being conducted by the National Institutes of Health (NIH).

The Relapsing Polychondritis Foundation and Race for RP are pleased and proud to support the distribution of the survey.

We salute all those who are sharing their valuable time, clinical information and expertise to help establish classification criteria for relapsing polychondritis and facilitate future clinical studies.

 

Original Post – March 19, 2020

The Relapsing Polychondritis (RP) Foundation and Race for RP are distributing a patient-reported symptoms survey, which is being conducted by the National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH), to support the development of classification criteria for the disease.

If you are an RP patient, please participate in the relapsing polychondritis (RP) patient-reported symptoms survey. Your participation as an RP patient is critically important as it will further research!  Please share this survey link with other RP patients and encourage them to participate.

SURVEY LINK: https://www.surveymonkey.com/r/NIHrpsurvey

There are no validated classification criteria for RP and given that some manifestations are organ- or life-threatening, it is imperative that classification criteria for RP have adequate sensitivity to identify cases early during the disease.

The survey, being coordinated by Dr. Marcela Ferrada, MD, of NIAMS, aims to collect as many responses as possible from qualified patients about their symptoms and the frequency with which they occur.

Collecting this data will advance the goal of standardizing definitions of RP to create uniform groups of patients with key shared features for clinical research and may also provide context to aid in diagnosis.

“A high level of participation in this survey is of critical importance because advancement in research, diagnosis, and potential treatments depends on establishing classification criteria to assemble well-defined cohorts, and we can only achieve this by collaborating with patients at a very large scale,” according to Nancy Linn,  Chair of the Relapsing Polychondritis Foundation.

The NIAMS survey is for RP patients who are at least 18 years old.  Your responses are voluntary and confidential.  You will not be compensated for your participation.

SURVEY LINK: https://www.surveymonkey.com/r/NIHrpsurvey

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