Mast Cell Disorder Patient Survey: March 23 – April 3, 2017 (Survey is Now Closed)

Apr 02, 2017

Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them

In collaboration with Georgetown University’s Biomedical Graduate School, The Mastocytosis Society (TMS) invited participation in a research study titled “Perceptions of Patients with Mast Cell Disorders (Mastocytosis and Mast Cell Activation Syndrome) and the Physicians Who Care for Them. This portion of the study, which collected patient responses online through SurveyMonkey from March 23rd – April 3rd, 2017, was conducted by Stephanie Gubb, BS, CCRP, and Irene Jillson, PhD. It was reviewed by Susan Jennings, PhD, Research Chair, and Valerie M. Slee, RN, BSN, Chair, Board of Directors, of TMS. The purpose of this survey was to explore perceptions of patients with mastocytosis, cutaneous and systemic, and mast cell activation syndrome (MCAS) regarding priority health, social and other needs.

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,

Stephanie Gubb BS, CCRP

Georgetown Graduate Candidate 2017

Georgetown University

Irene Anne Jillson, PhD

Associate Professor

Georgetown University

 

This project was reviewed by TMS