Oct 06, 2020
Below is a description of updates and progress on projects related to The Mast Cell Disease Society, Inc. (TMS) Research Committee. Major activities and initiatives are noted, but for a full list of activities in which the committee is involved, please see our Join the Research Committee section of this website. Where applicable, click on titles and other links for more information.
TMS Article on the Patient Perspective on Symptoms of Mast Cell Activation
TMS was recently invited to write an article on Symptoms of Mast Cell Activation: The Patient Perspective for a mast cell disease focused issue of the Annals of Allergy, Asthma & Immunology. Our manuscript is due for submission in April 2021.
TMS Research Presentations During the 2020 ECNM Annual Meeting
Valerie M. Slee, RN, BSN, TMS Chair, and Susan Jennings, PhD, TMS Research Chair, were invited to share the needs of patients in the US with mastocytosis and with mast cell activation syndrome (MCAS) during the 2020 European Competence Network on Mastocytosis (ECNM) Annual Meeting in Vienna, Austria, and to take the lead in writing a publication reporting on the needs of mast cell disease patients internationally.
TMS works with researchers to make our mast cell disease community aware of patient surveys that are related to our disease set, including those developed and conducted by TMS. Our latest survey initiatives are the TMS 2020 Needs Assessment for our mast cell disease community, the TMS 2020 Patient Survey to Assess the impact of COVID-19 in patients with mast cell disease and the 2018 TMS Mast Cell Activation Syndrome Patient Survey.
In addition, we work with drug development companies to help them connect with our patient population, for those patients who might be interested in becoming involved in the drug development process. Our community can provide valuable information to these companies, by sharing our experiences and allowing industry representatives to better understand what patients in our community have to deal with on a daily basis.
Celeste Finnerty, PhD, and Susan Jennings, PhD, from the TMS Research Committee attended Global Genes Data DIY Workshops on Developing Collaborative Research Networks (Philadelphia, PA, 2019) and on Becoming a Data-Centric Community (Houston, TX, 2020), which provided extensive opportunities to expand their knowledge and to network with others interested in rare disease research. TMS thanks Global Genes and the Chan Zuckerberg Initiative for providing the financial support that allowed our researchers to attend these wonderful workshops!
Book Chapter on International Support and Advocacy for Mast Cell Disease Patients and Caregivers
In collaboration with other leaders in the global mast cell disease community, TMS published an invited chapter in a book edited by Cem Akin, MD, PhD:
Jennings SV, Slee VM, Hobart, JS, Morrison Thuler L, Mayne DW, Martín-Martínez M. (2020) International Support and Advocacy for Mast Cell Disease Patients and Caregivers. In C Akin (Ed.) Mastocytosis: A Comprehensive Guide (pp. 267-286) Switzerland: Springer Nature.
Many of us at TMS worked closely with leaders of the American Initiative in Mast Cell Diseases (AIM), co-chaired by Jason Gotlib, MD, MS, and Cem Akin, MD, PhD, on the AIM Inaugural Physician/Investigator Conference, which was held in May 2019 in the San Francisco Bay Area. AIM is intended to become a network of mast cell disease centers in the Americas. Plans to establish AIM grew out of a series of Mast Cell Disorder Challenges Meetings that TMS hosted during past ASH and AAAAI Annual Meetings (and prior to several European Competence Network in Mastocytosis Annual Meetings). During the AIM Inaugural Meeting, TMS presented a poster on data obtained from the 2018 TMS MCAS Patient Survey.
2019 American Academy of Allergy Asthma and Immunology (AAAAI) Annual Meeting
Members of the Research Committee joined others from the TMS team at the 2019 AAAAI conference in San Francisco, CA in February. They attended a variety of medical and scientific presentations, the AAAAI Mast Cell Disorders Committee and Lay Organization meetings, hosted a planning meeting to help prepare for the American Initiative in Mast Cell Diseases (AIM) Inaugural Physician/Investigator Meeting (to be held in May 2019 in the San Francisco Bay Area), participated in other meetings related to various TMS initiatives and presented a poster on data from the 2018 TMS MCAS Patient Survey.
2018 American Society of Hematology (ASH) Annual Meeting
Dr. Jennings joined other members of the TMS team at the December 2018 ASH Annual Meeting in San Diego, CA, where TMS had a booth, attended medical/scientific sessions and participated in several meetings related to various TMS initiatives.
TMS published a collaborative article, “Patient Perceptions in Mast Cell Disorders”, in the Mastocytosis issue of Immunology and Allergy Clinics of North America. Inclusion of an article by TMS authors in this special issue, partnering with others in the field of mast cell diseases, is an exciting first for TMS!
The second set of results of the TMS 2010 online survey of patients with mast cell disorders, Patient Clinical Experiences and Beyond, have now been published!* Please click on the link above for more information and links to all reports on this survey.
In 2013-14, TMS Research Committee members worked with the Mast Cell Disorders Committee of the AAAAI (including Drs. Arnold Kirshenbaum, Joseph Butterfield, Cem Akin, Mariana Castells and Catherine Weiler) to create proposals for new medical diagnostic (ICD-10-CM) codes for MCAS and revised codes for mastocytosis. These proposals were submitted jointly by TMS and the AAAAI to the Centers for Disease Control and Prevention (CDC) and were presented during the CDC Coordination and Maintenance Committee Meetings held March 19-20, 2014 (MCAS) and September 23-24, 2014 (mastocytosis). ICD-10-CM codes related to MCAS became effective in October 2016 and updates to ICD-10-CM codes for mastocytosis were implemented in October 2017.
Additional Research Activities
- Our committee collaborates with other TMS committees and our Medical Advisory Board on the creation of updated educational materials for TMS.
*First set of survey results has been previously published:
- Jennings S, Russell N, Jennings B, Slee V, Sterling L, Castells M, et al. The Mastocytosis Society Survey on Mast Cell Disorders: Patient Experiences and Perceptions. J Allergy Clin Immunol Pract. 2014;2(1):70-6.
- TMS Chronicles (Winter 2014)