The TAMS Committee is proud to invite our eligible community members to participate in a meaningful Australian-led research project directed by Jackson Rees, a Master of Genomics and Health student at the University of Melbourne, with assistance from TAMS.
This project marks a major milestone for TAMS research and is a significant opportunity for the MCAD patient community to contribute their experiences to local research.
The project examines experiences with MCAD diagnosis and genetic testing (e.g., KIT D816V and TPSAB1), including access, clarity of result explanations and the role of testing in guiding clinical discussions.
Please read Jackson’s patient recruitment email below carefully before deciding whether to take part.
MCAD Patient Recruitment Email
The University of Melbourne
Human Ethics Committee Project ID: 34265
This email is being sent to invite you to participate in the research study survey for the project ‘Genomic Testing for Clonal Mast Cell Activation Disorders: Access, Experience and Current Practice’. We are contacting individuals within the mast cell activation disorder (MCAD), also known as mast cell disease (MCD), community in hopes of recruiting people who have received a positive diagnosis of mast cell activation syndrome (MCAS) or mastocytosis. To participate we require you to be over the age of 18.
This study aims to highlight genetic testing in the landscape of MCADs, more specifically, within MCAS or mastocytosis. This includes the utility, accuracy, and prominence of genetic testing currently within the diagnostic process.
The survey has 3 sections and will take roughly 10 minutes to complete. The survey will include questions regarding personal medical history, including diagnosis and testing. Surveys will be anonymous.
To complete the survey or read further information, please click the link below. This will take you to the survey consent and participant information page. For further questions or concerns, do not reply to this email; please use one of the contacts provided on the information page.
Regards,
Jackson Rees, BSc
Master of Genomics and Health
University of Melbourne
This research represents a significant step towards enhancing Australia’s scientific knowledge base and understanding of the MCAD community’s experiences, needs and diagnostic testing pathways. It will support future research aimed at improving diagnosis and outcomes for those affected.
We strongly encourage eligible participants to make their voices heard by sharing their experiences through this research survey. Details of your MCAD journey can help form part of the foundations for change for the MCAD community.
Kind regards,
TAMS Committee
