Aug 11, 2020
The Mast Cell Disease Society, Inc.
2020 Needs Assessment Survey
URGENT!: Share Your Mast Cell Disease-Related Needs and Concerns!
The Mast Cell Disease Society, Inc. (TMS; DBA The Mastocytosis Society, Inc.) has launched The TMS 2020 Mast Cell Disease Needs Assessment Survey in collaboration with researchers from Middle Tennessee State University. Responses to this IRB approved survey will be anonymous and it is vital that our whole mast cell disease community participates!
Why we are conducting this NEW survey:
- TMS has been 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 Mast Cell Disease community at the ECNM Annual Meeting in Vienna, Austria, at the end of August. Cem Akin, MD, PhD, University of Michigan, is serving as our advisor on this aspect of the project. WE WANT TO MAKE SURE YOUR VOICE IS HEARD! Take this survey by 11 pm (EDT) on August 17, 2020 to have your responses incorporated into these ECNM presentations. If you take the survey after this time, while your data will not be included in TMS presentations at the ECNM meeting, it will still be incorporated into reports of survey data and future research.
- 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.
You can take this survey if:
- You have been diagnosed with a mast cell disease (any form of mastocytosis, MCAS or HaT)
- Your physician suspects you have one of these diseases, you are being evaluated for or you are seeking an evaluation for one of these diseases
- You are a caregiver of a minor who has one of these diseases
- You are a caregiver of someone with one of these diseases who is unable to take the survey for themselves
It is vital that the voices of all those with mast cell disease in our community are heard, so please share this survey information with all mast cell disease-related groups! You DO NOT need to be a member of TMS to take this survey! (If you would like to join, membership in TMS is FREE. Join here.)
If you would like to participate in this survey, please click on the following link:
We encourage our entire mast cell disease community to participate in this survey, even if you do not live in the US or receive your medical care in the US!
While only the data from those living and receiving care in the US will be used to create the TMS Top 10 Needs for Patients with Mastocytosis AND Top 10 Needs for 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 have also been invited to present their country’s Top 10 Needs lists during the ECNM meeting.
We anticipate that this survey will require 30 – 45 minutes of your time to take. While some items in this survey may seem repetitive, this is on purpose! The questions were carefully developed in a manner that will allow us to analyze the data to identify the needs of individuals of different ages, with different diagnoses or who are in the process of being diagnosed. We are planning a much larger evaluation of the data beyond what will be used to develop the TMS presentations for the ECNM in August. However, this survey was also formatted in a way that will allow our survey team to analyze the data quickly and effectively to create our US Top 10 lists in time for the upcoming ECNM meeting. PLEASE HELP US SHARE YOUR VOICE!
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)