The survey included three sections: demographics (e.g., age, gender, race); patients’ experience with symptoms and related severity; and patients’ experience in obtaining care. Responses through SurveyMonkey were sent directly to the Georgetown Principal Investigator and were not sent to TMS.

Responses to this survey were anonymous and cannot be linked to respondents in any way. No identifying information was collected at any point during the study. The SurveyMonkey system was determined to be sufficiently protected/secure to allow for its use by Georgetown University researchers. Aggregate, non-identifiable data obtained from this survey will be shared with TMS members, who also will be informed of any published articles based on this study.

For those who took part in Georgetown’s anonymous patient survey, we would like to thank you for your participation in this study about patient perspectives regarding priority health, social and other needs. We appreciate your willingness to help, honesty, and candidness in answering what are sometimes uncomfortable or awkward questions. Your contribution to this important research into our knowledge and understanding of mast cell disorder patient experiences is invaluable for helping to improve patient care and advance science. Please watch this site for future updates regarding this survey and what we uncover during our analysis.

If you have any questions regarding the survey or this research project in general, please contact the principal investigator, Stephanie Gubb, at (571)-239-8760 or via email at smg256@georgetown.edu, or Dr. Irene Jillson at (202) 687-1312 or iaj@georgetown.edu. If you have any questions about your rights as a research participant, please contact the Georgetown University IRB at (202) 687-1506 or irboard@georgetown.edu.

Sincerely,

This project was reviewed by TMS