Research


A Note from the Research Chair (July 2019)

Hello Mast Cell Disease Community!

Our TMS Research Team continues to work hard on a variety of exciting initiatives! See the Research Committee Activities page for a listing of some of our key projects. We are thrilled to announce that Matthew Hamilton, MD (Brigham and Women’s Hospital/Harvard University, MA), and colleagues, have been awarded the 2019 research grant offered jointly by TMS and the American Academy of Allergy, Asthma and Immunology (AAAAI). The 2019 TMS Mast Cell Activation Syndrome (MCAS) Patient Survey has been a great way for us to share the collective MCAS patient voice. Data from this survey has now been presented at an MCAS Meeting at the National Institutes of Health (September 2018), as a poster at the AAAAI Annual Meeting (February 2019, San Francisco, CA; poster at above link), and most recently at the American Initiative in Mast Cell Diseases (AIM) Inaugural Physician/Investigator Meeting (May 4-5, 2019, Stanford University, CA).

The TMS Research group was also heavily involved in…

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Research News

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Mast Cell Activation Syndrome Patient Survey: UPDATE

Jul 16, 2019

Mast Cell Activation Syndrome (MCAS) Patient Survey This survey was open from August 17 – 25, 2018. (THIS SURVEY IS CLOSED) UPDATE-7/16/19 Our MCAS Survey team was excited to have a new poster on the survey data accepted for presentation…

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Pharmaceutical Company Patient Advisory Board: Advanced Systemic Mastocytosis

Jul 16, 2019

We at TMS strive to keep patients and families informed of opportunities that may help lead to improvements of quality of life for individuals affected by mast cell disease. With that in mind, we are sometimes able to offer opportunities…

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Deciphera Pharmaceuticals Presents: Living with Systemic Mastocytosis (SM) WebEx

Oct 03, 2018

VIDEO NOW AVAILABLE ONLINE! On Tuesday, October 9, 2018, Deciphera Pharmaceuticals hosted a webinar for the Systemic Mastocytosis (SM) community about Living with Systemic Mastocytosis, and Deciphera Pharmaceuticals’ ongoing clinical trial of DCC-2618, an investigational drug being testing in people with…

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Research Committee updates

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TMS Research Committee Activities

Mar 21, 2019

Below is a description of updates and progress on projects related to The Mastocytosis Society (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 for more information. […]

Nancy Russell, DrPH, Steps Down as Co-Chair of the Research Committee

Feb 01, 2017

Nancy C. Russell, Dr. PH (Doctor of Public Health), who has served as Co-Chair of The Mastocytosis Society (TMS) Research Committee and of the TMS Patient Survey Committee, has retired from The Mastocytosis Society as of January 1, 2017 after nine years of extraordinary service to our members. This is Dr. Russell’s most recent retirement, […]

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Research grants

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2019 RESEARCH AWARD: TMS Partners with the AAAAI to Fund MCAS Research

Jul 18, 2019

In 2018, The Mastocytosis Society, Inc. (TMS) conducted a survey on Mast Cell Activation Syndrome (MCAS) with over 1700 respondents, which included participants with Mastocytosis or Hereditary Alpha-Tryptasemia (HAT) who may also have MCAS. Nearly 50% of survey respondents also reported physician-diagnosed Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS). Studies into the relationship between MCAS and dysautonomia […] Learn more

2018 TMS Research Grant Awards

Feb 12, 2018

The Mastocytosis Society, Inc. (TMS) has awarded three research grants totaling $170,000 to support research in Pediatric Mastocytosis, including Related Disorders of Pediatric Mast Cell Activation. These grants were made possible by generous donations from the Catalano Family through Wyatt’s Warriors, and from Karen and Jim Houghton. TMS congratulates our 2018 Research Grant recipients! 2018 […] Learn more

American Initiative in Mast Cell Diseases (AIM)/ Challenges Meetings

AMERICAN INITIATIVE IN MAST CELL DISEASES (AIM)/MAST CELL DISORDER CHALLENGES MEETINGS: UPDATE

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Patient Surveys

PATIENT SURVEY INFORMATION AND UPDATES

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Consensus Statements and WHO Updates

International Consensus Statements, Position Papers and WHO Criteria--Medical References

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ICD-10-CM Codes Update

TENTH EDITION  OF THE INTERNATIONAL CLASSIFICATION OF DISEASES - CLINICAL MANIFESTATION (ICD-10-CM) CODE SET FOR MAST CELL ACTIVATION SYNDROMES AND MASTOCYTOSIS

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Patient Registries

Resources