RPASF Announces the First Relapsing Polychondritis Epidemiology Research Survey

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Data will be used for medical publications to increase awareness and knowledge in the medical community.

The Relapsing Polychondritis Awareness and Support Foundation (RPASF) is excited to announce the launch of the relapsing polychondritis (RP) epidemiology research survey, which will be used for medical publications to increase awareness and knowledge in the medical community.

“The epidemiology research survey is extremely important to the worldwide relapsing polychondritis community. We hope to have 500 global participants by July 2016.” said Tom Christie, Chair/CEO of RPASF and RP patient. “This participation goal is lofty, but the RP community is amazingly supportive and it has demonstrated its ability to use social media to achieve its objectives.”

Initial data will be from global patients who have been diagnosed with RP. The data will be used to submit an abstract to the American College of Rheumatology’s annual meeting during November 11th-16th in Washington DC. When sufficient data has been collected and studied, the research results will be published.

The RP epidemiology research survey will complement to the Autoimmune Disease Patient Registry Research Network (ARNet) data, which continues to be gathered with the American Autoimmune Related Diseases Association, Inc. (AARDA). The RP epidemiology survey will be completely anonymized, which means that personally identifiable information (such as name, address or other data elements that could be used to identify participants) will NOT be included.

Patients who have contributed to ARNet will receive a priority email invitation to participate in the RP epidemiology survey. Other RP patients can participate in the RP epidemiology research survey by sending an email to admin(at)polychondritis(dot)org and requesting a link to the survey.

Patients who are willing to contribute data to ARNet can do so by visiting http://www.polychondritis.org/arnet/, which includes a privacy statement and RPASF’s confidentiality policy.

Relapsing Polychondritis causes painful inflammation and destruction of cartilage that can be fatal. It can affect many parts of the body, but the most frequently affected areas include the ear, nose, trachea and joints. Because the disease is so rare affecting only three to five people per million, there is a profound lack of understanding of its causes, symptoms and treatment options. Even in the United States, where 30 million people are suffering from rare diseases, 95 percent of rare diseases do not have FDA approved drug treatment.

For more information about Relapsing Polychondritis or The Relapsing Polychondritis Awareness and Support Foundation, please visit http://www.polychondritis.org

For more information about AARDA or participating in ARNet, please contact AARDA at 586-776-3900 or http://www.aarda.org.

The Relapsing Polychondritis Awareness and Support Foundation, Inc. is a 501(c)(3) non-profit organization dedicated to supporting persons affected by Relapsing Polychondritis through education, advocacy, and patient and family assistance.

Contact:Thomas Christie, Chair/CEO
The Relapsing Polychondritis Awareness and Support Foundation, Inc. (RPASF)
tchristie(at)polychondritis(dot)org
612.296.1628

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