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TAMS: Pre and post-diagnostic survey (patients)
1.
What is your current formal diagnosis?
Mast cell sarcoma (MCS)
Maculopapular cutaneous mastocytosis (urticaria pigmentosa)
Cutaneous mastocytoma (isolated/multilocalised)
Diffuse cutaneous mastocytosis (DCM)
Indolent systemic mastocytosis (ISM)
Bone marrow mastocytosis (BMM)
Smouldering systemic mastocytosis (SSM)
Aggressive systemic mastocytosis (ASM)
SM with associated haematological neoplasm (SM-AHN)
I have diagnosed mastocytosis, but I don’t know the specific variant
Mast cell leukaemia (MCL)
Monoclonal/primary mast cell activation syndrome (MMAS)
Secondary mast cell activation syndrome (sMCAS) - Allergic or other IgE-mediated MCAS
Idiopathic mast cell activation syndrome (iMCAS) - No identified cause or mutation
Mast cell activation syndrome (MCAS) + hereditary alpha tryptasemia
Combined (mixed) MCAS
I have diagnosed MCAS, but I don’t know the specific subtype
I am not sure of my diagnosis
I don't have a formal diagnosis
I am self diagnosed
2.
Which state or territory do you currently reside in?
ACT
NSW
QLD
VIC
SA
WA
NT
TAS
Aotearoa New Zealand
Other (please specify)
3.
Who diagnosed you?
Clinical immunologist or immunopathologist
Haematologist
Gastroenterologist
General Practitioner (GP)
I don't have a formal diagnosis
Other (please specify)
4.
If you're comfortable, please provide the name of the doctor who diagnosed you
5.
Have you ever tested positive for any of the following genetic, clonal or cellular markers?
I have not had clonal or genetic marker testing
KIT D816V mutation – peripheral blood
KIT D816V mutation – bone marrow
CD2/CD25/CD116 (GI samples or bone marrow)
TPSAB1 gene copy number testing (HaT testing)
Other clonal or genetic marker (please specify)
6.
If you have only had Hereditary alpha-tryptasemia (HαT) confirmed, are you currently under investigations for a mast cell activation disorder?
No, my doctor has diagnosed symptomatic HaT
Yes, I am being investigated for a variant of mastocytosis
Yes, I am being investigated for a subtype of MCAS
7.
Have you had any of the following tests for mast cell mediators or related biomarkers?
( Select all that apply)
*Please note: mention of these tests does not constitute a recommendation. Only a small number of these tests have been proven applicable to all MCADs.
Plasma tryptase (episodic)
Plasma tryptase (baseline)
24-hour urine histamine/methylhistamine
24-hour urine prostaglandin D2 (PGD2)
24-hour urine 11β-pgf2α (pgd2 metabolite)
24-hour urine 5-Hydroxyindole Acetic Acid & Catecholamines
24-hour urine leukotriene E4 (LTE4)
Heparin
Chromogranin A
Serum IL-6
TNF-alpha
Diamine oxidase (DAO)
I have not had any of these tests
I do not know which testing I've had
Other (please specify)
8.
Which laboratory or pathology providers processed your testing? (e.g. Douglass Hanly Moir, Sullivan Nicolaides, SA Pathology, etc.)
9.
If you have ordered any independent mast cell activation testing what company was it ordered from?
10.
Apart from haematologists and/or immunologists what
other medical practitioners
currently provide supportive care for your MCAD or suspected MCAD management?”
General Practitioner (GP)
Specialist/Acute GP
Dietitian
Physiotherapist
Occupational Therapist
Osteopath
Exercise Physiologist
Clinical Psychologist
Chiropractor
Psychiatrist
Pain Specialist
Naturopath or Integrative GP
I currently do not have any supportive care providers
Other (please specify)
11.
TAMS is seeking to engage with practitioners treating and assisting in the management of MCADs. Will you share the practitioner version of this survey with any of your treating doctors who are MCAD-aware?
Yes – I will share the practitioner survey and letter
No – I would prefer not to
No - patients cannot contact this doctor directly
12.
Can your doctor help others in our community? Please share the name(s) of your treating doctors so TAMS can seek permission to put them on our request-only state-by-state lists
13.
Do you know which diagnostic criteria were used to confirm or suggest your MCAD diagnosis?
Mastocytosis:
World Health Organization (WHO) criteria (
est. 2001
; updated 2017, 2022 – includes systemic, cutaneous, and advanced/aggressive forms)
Mastocytosis:
I was diagnosed before
2001
(prior to WHO classification of mastocytosis) — e.g. urticaria pigmentosa, systemic mast cell disease, systemic anaphylaxis of unknown etiology, mast cell hyperplasia, suspected neoplastic disorder
MCAS:
The Vienna Consensus Criteria also known as “Proposed Criteria 1”
est. 2010
(If your doctor referred to the ASCIA position paper this answer applies to you)
MCAS:
Afrin’s Criteria also known as “Proposed Criteria 2”
est. 2012
MCAS:
A combination of both Proposed Criteria 1 & 2
I don't have a diagnosis
I'm not sure/it wasn't explained to me
Other (please specify)
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