Research Opportunities-Patient Interviews

As patients with a rare disease, assisting mast cell disorder-focused companies to understand how they can better evaluate our symptoms is one way we can help to improve our prospects for successful therapies in the future. Please see below for research opportunities involving patient interviews.

Please DO NOT send medical records or contact information to TMS for any research opportunities listed below.


RESEARCH OPPORTUNITY-PATIENT INTERVIEWS

Have you been diagnosed with Indolent Systemic Mastocytosis?  A research study is underway to gather feedback about a new questionnaire to measure the symptoms people experience with indolent systemic mastocytosis.  No medications will be given as part of this study. We are looking for people with indolent systemic mastocytosis to participate in a 60-minute interview by telephone or Skype. If eligible, you will receive $100 for your participation.  The information you share will help educate the global healthcare community about indolent systemic mastocytosis from the patient’s perspective and inform the development of new treatments.  For more information or if you wish to participate, please email Roger Lamoureux (Research Associate, Adelphi Values) at Roger.Lamoureux@adelphivalues.com and provide your name and preferred contact telephone number. Adelphi Values will then call you to arrange the next steps for you taking part in the interviews or provide you with more information. Alternatively, please contact us at +1 617-720-0001 or +1 877-202-4215 (toll-free) and leave a message stating your name and telephone number, and a member of the Adelphi Values team will call you back.

Additional Information/Printable Announcements:

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PATIENT LETTER

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