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TAMS Practitioner Survey – Diagnostic and management approaches in MCADs
1.
What is your professional specialty?
Clinical immunologist
Immunopathologist
Haematologist
Gastroenterologist
General practitioner
Other (please specify)
2.
Do you diagnose or manage patients with any of the following MCAD variants or subtypes?
Mast cell sarcoma
Maculopapular cutaneous mastocytosis (urticaria pigmentosa)
Cutaneous mastocytoma (isolated/multilocalised)
Diffuse cutaneous mastocytosis
Indolent systemic mastocytosis (ISM)
Bone marrow mastocytosis (BMM)
Smouldering systemic mastocytosis (SSM)
Aggressive systemic mastocytosis (ASM)
Systemic mastocytosis with associated haematologic neoplasm (SM-AHN)
Mast cell leukaemia (MCL)
Primary/monoclonal mast cell activation syndrome (MMAS)
Secondary MCAS
Idiopathic MCAS (iMCAS)
Combined MCAS
MCAS + HaT
3.
Which variants or subtypes do you encounter or diagnose most often?
4.
In your practice, do you refer MCAS patients to a specific subtype (e.g. Primary/Monoclonal, Secondary, Idiopathic)? (Multiple choice)
Yes – always
Yes – where clinically appropriate
No – subtype is not routinely assigned
5.
For patients with cutaneous or systemic mastocytosis (excluding advanced SM), do you provide further classification of their exact subtype once initial diagnosis is established?
Yes – routinely
No
6.
Which laboratories do you currently rely on for testing relevant to MCAD diagnosis and monitoring?
7.
Do you routinely refer patients with MCAS or mastocytosis to any third-party allied health providers you have found helpful (e.g. dietitians, psychologists, pain clinics)?
Yes – regularly
Yes – occasionally
No – I do not currently refer to allied health
If yes (please specify types)
8.
Do you order any international tests for MCAD-related diagnostics (e.g. Hereditary Alpha Tryptasemia?
Yes – for HaT testing
No
Yes – for other tests (please specify)
9.
Do you routinely test suspected and confirmed MCAD patients for HaT?
Yes – routinely
Yes – in selected cases (e.g. elevated tryptase, family history, unclear diagnosis)
No – I do not consider HaT testing part of the diagnostic process
Other (please specify)
10.
When diagnosing MCAS, which proposed diagnostic criteria do you refer to?
Vienna Consensus Criteria (Proposed Criteria 1) *If using ASCIA's position paper please select this answer.
Afrin’s Proposed Criteria (Proposed Criteria 2)/Afrin’s Conservative Criteria 2
I refer to both
Other (please specify)
11.
Do you currently refer to “Mast Cell Activation Disorders (MCADs)” as an umbrella term encompassing both mastocytosis and MCAS as distinct but related conditions, in line with ASCIA’s terminology?
Yes – I consistently use this framework
Yes – but only in specific contexts (e.g. referral or education)
No – I use the term “Mast Cell Diseases” instead
No – I refer to Mastocytosis as a form of Primary MCAS
I do not use any umbrella term
No – I was not aware of ASCIA’s umbrella definition
Other (please specify)
12.
Are there any specific resources or information you believe patients with MCAS or Mastocytosis are commonly seeking, that you feel are currently lacking or difficult to access?
*Please feel free to email us to start a more detailed dialogue - info@mastocytosis.org.au
13.
Are there particular types of education or materials you believe should be more accessible to patients to support their understanding and management of MCADs?
Resources about medication information & training (epinephrine auto injectors)
Resources about communicating diagnosis and post-diagnostic needs with family, friends, community, education services and workplaces
Resources and education events about allied health services to support quality of life adjunct to MCAD management
FAQs which also address common patient and family misconceptions
Strictly community focused resources (e.g., craft events, meditation, journaling, etc.)
Third party resource collations, including details about financial and comorbidity supports where applicable
Other (please specify)
14.
Would you be willing for TAMS to contact you about potential future engagement opportunities, such as being involved in our patient webinar series or our Doctors' Conference Day in 2026?
Yes – I’d be happy to be contacted about future events
Maybe – please send me more information
No – I prefer not to be contacted for events
15.
May we add your name to our private, state-by-state request-only list of MCAD-aware clinicians?
*This list is only provided to patients who directly contact TAMS. It is never published publicly and does not imply endorsement, nor does it guarantee diagnosis or treatment outcomes.
Yes – please include me
No – I’d prefer not to be included
Contact me to discuss further (provide preferred email)
16.
Do you currently offer Telehealth services
Yes - including initial appointments
Yes - after initial face-to-face
Yes - for rural patients only
No
17.
Do you have a Telehealth policy or information page you can share with TAMS to help patients understand how to access your services?
18.
Do you have any other colleagues you are aware of in your state with an interest in treating MCADs? If yes, please provide their name(s). TAMS will reach out directly to seek their interest in being on our state-based lists, and to complete this survey.
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