Feb 17, 2021
The Mast Cell Disease Society, Inc. 2020 Needs Assessment Survey
This survey was conducted from August 2020 – February 2021, and is now CLOSED.
THANK YOU to those who shared their Mast Cell Disease-Related Needs and Concerns!
The Mast Cell Disease Society, Inc. (TMS; DBA The Mastocytosis Society, Inc.) launched The TMS 2020 Mast Cell Disease Needs Assessment Survey in collaboration with researchers from Middle Tennessee State University.
Why we conducted this survey:
- TMS was invited by the European Competence Network on Mastocytosis (ECNM) to present (virtually) the Top 10 Needs of patients with Mastocytosis AND the Top 10 Needs of patients with Mast Cell Activation Syndrome (MCAS) (two separate lists) in our US Mast Cell Disease community at the ECNM Annual Meeting in Vienna, Austria, in August of 2020. Cem Akin, MD, PhD, University of Michigan, is serving as our advisor on this aspect of the project.
- This survey is a key component of a larger initiative by TMS to identify and share the needs, experiences, and perceptions of people of all ages with a mast cell disease, including mastocytosis, MCAS and hereditary alpha tryptasemia (HaT). A solid understanding in these areas will allow our whole community to better advocate for patients and to take action to meet these needs.
While only the data from those living and receiving care in the US was used to create the TMS Top 10 Needs for US Patients with Mastocytosis AND Top 10 Needs for US Patients with MCAS presentations for the 2020 ECNM Annual Meeting, all data will be presented elsewhere and used to guide national and international efforts in education, support, advocacy and research related to mast cell diseases. Mast cell disease patient organizations from several European countries were also invited to present their country’s Top 10 Needs lists during the ECNM meeting. After the ECNM meeting, Valerie Slee, RN, BSN, Chair of the TMS Board of Directors, and Susi Jennings, PhD, Chair of the TMS Research Committee, were invited by Peter Valent, MD, of the ECNM, to lead the development of an article on the needs of mast cell disease patients internationally. A team of patient advocates, including leaders from the UK, Spain and Australasia, are now partnering with TMS to work with patient groups around the world on this effort to share our international needs with physicians and others.
OUR SURVEY TEAM:
Angela Bowman, PhD, Middle Tennessee State University and TMS Research Committee Member
Susan Jennings, PhD, TMS Research Committee, Chair
Valerie Slee, RN, BSN, TMS Board of Directors, Chair
Celeste Finnerty, PhD, TMS Research Committee Member
Jan Hempstead, RN, TMS Board of Directors; TMS Patient Care Coordination Chair
Barbara Ruby, MA, TMS Advocacy Committee, Chair
Nicole Fox, RN, TMS Education Committee, Chair
Kahler Stone, DrPH, Middle Tennessee State University
Chanell Haley, MS, Middle Tennessee State University
Cem Akin, MD, PhD, University of Michigan (Advisor for ECNM Top 10 Needs for Patients with Mastocytosis and MCAS Project)