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The National Institutes of Health (NIH) is interested in studying patients with Relapsing Polychondritis (RP)

Adult and pediatric patients are invited to come to the NIH in Bethesda, MD to participate in a research study.  The purpose of the study is to observe how RP affects you and to collect blood samples for research.  All patients will receive comprehensive clinical evaluation by physicians with experience caring for patients with RP.  Specific treatments will not be offered as part of study participation, but recommendations will be provided to your regular doctors as appropriate.

RP patients who would like to have appointments at NIH and be considered for support from the Friends of Patients at the NIH should contact:

Wendy Goodspeed, RN

Research Nurse Specialist

NIAMS/NIH

goodspew@mail.nih.gov

Comments(3)

  1. REPLY
    Marta. Villar says

    I have been on Riytuxan infusions since 2014. Was diagnosed With RP after a bad flair up that effected my
    Ears and bridge of my nose. I was put on the infusions
    And my ears return to normal. Except I lost my hearing for months on the right side.
    So was going to be put on humeria and now they
    Are changing it to enbrel instead. I am very scared of side effects. I have had three tias. What should I do
    I am already taking mexaltrexate.

    • REPLY
      Kate Church says

      Hi Marta. Sorry for the delay in answering. So sorry about what you are going through! Since we aren’t doctors we can’t give out medical information. However, there is a Relapsing Polychondritis Support Group I will refer you to that is excellent. It is a closed group so your posts won’t show up on your feed, though you and people in the group can. It is on FaceBook. RP-Relapsing Polychondritis Awareness and Support. Many very knowledgeable people, a library of info in the Files and the ability to search for prior topics are some of the features. The people are very friendly and willing to help.

      Kate Church

  2. REPLY
    linda lorenz says

    I tried to call Marcela, but she was not able to pick up the phone (I know she’s super busy) but her voicemailbox was full so I couldn’t leave a message. Do you have any other contact info on the study or who I could contact?

    Thanks
    Linda in CA

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