Contact Clinics or the AAN
AAN Clinic Centres
The AAN clinics provide a multi-disciplinary service to type amyloidosis and provide management advice for all types of amyloidosis. The clinics also run clinical trials.
The day to day provision of therapy and supportive care cannot be administered State-wide for every amyloidosis patient and we share this essential care with local physicians.
Unfortunately, we do not treat Cerebral Amyloid Angiopathies. This form of “localised amyloidosis” has a distinctly different diagnostic and management approach when compared to the other amyloidosis. The AAN suggests referral to a neurologist or geriatrician with subspecialist expertise for support and advice.
Westmead Amyloidosis Clinic, Sydney
Monthly Multidisciplinary Amyloidosis Clinic as well as a monthly Cardiac Amyloidosis Clinic at Westmead Hospital
Multidisciplinary Clinic attended by haematologists, cardiologists, neurologists, immunologists, genetic medicine and supported by nephrologists and oral medicine specialists
Contact/referrals:
Email: WSLHD-WAC-Correspondence@health.nsw.gov.au
Ph: 02 8890 7546
Fax: 02 8890 8907
St Vincent’s Amyloidosis Clinic, Sydney
Fortnightly Multidisciplinary Amyloidosis Clinics, Thursday afternoon, Heart and Lung Clinic, St Vincent’s Hospital, Darlinghurst.
Multidisciplinary Clinic attended by haematologists, cardiologists, neurologists, and supported by clinical genetics, nephrologists, ENT, radiologists and histopathologists.
Contact/referrals:
Email: amyloidreferrals@svha.org.au
Fax: 02 8382 2488
Box Hill Hospital, Eastern Health, Melbourne
– Weekly Monday morning Outpatient clinic
– Fortnightly Multi-Disciplinary Team meeting with haematologists, cardiologists, nephrologists, radiologists and histopathologists +/- neurologists and gastroenterologists.
– Extensive ATTR and AL amyloidosis clinical trials portfolio
Contacts:
VTAS Lead – Dr Brendan Wisniowski; Brendan.Wisniowski@easternhealth.org.au
Myeloma Lead – Dr Olga Motorna; Olga.Motorna@easternhealth.org.au
Haematology Director – A/Prof Stephen Ting; Stephen.Ting@monash.edu
All phone contactable via Box Hill Hospital switchboard: (03) 9895 3333
Referrals:
All Amyloidosis (& Myeloma) referrals via electronic portal: Patient Details (easternhealth.org.au)
Princess Alexandra Hospital Amyloidosis Centre, Brisbane
Fortnightly Friday afternoon clinic at Princess Alexandra Hospital
Clinic staffed by a team of health professionals including cardiologists, haematologists, neurologists, renal physicians, pathologists, specialised nurses, social workers
Contact/referrals
Email: Amyloidosis@health.qld.gov.au
Ph 07 3176 5772
Fax: 07 3176 4966
Link to website
Fiona Stanley Hospital, Perth
Monthly Amyloid clinic
Contact/referrals:
Sharon.McDonald2@health.wa.gov.au
Sandra.DeSausmarez@health.wa.gov.au
Ph 08 6152 5100
The Royal Adelaide Hospitals Affiliate Amyloidosis Clinic
Monthly multi-disciplinary meetings with review of results and biopsies, supported by haematologists, cardiologists, anatomical pathologists, nephrologists, neurologists, nuclear physicians as well as clinical trial and bone marrow transplant coordinators.
Contact/referrals:
Fax: 08 7074 6220
Phone: 08 7074 4100 (preferred contact for all new referrals and enquiries, via RAH Haematology Dept)
Australian Anatomical Pathology Laboratories
For tissue review and immunohistochemistry for amyloid typing
Westmead Hospital
Address Anatomical Pathologist
Department of Anatomical Pathology
Level 3 ICPMR
Westmead Hospital
Hawkesbury Rd
Westmead NSW 2145
Phone 02 8890 6222
Fax 02 987 2330
Note: these numbers are not for patients or general public enquiries
Sample requirements:
Tissue block and all stained slides
If the referring lab is cannot release tissue blocks, send the following unstained slides:
2x 4 micron thick unstained slide
8x 7micron thick unstained slides
(Please label which slides are which)
Document requirements :
A copy of the original pathology report
The request for second opinion form
The downloaded request form is applicable when the treating clinician and the pathologist (who provided the original opinion) agree upon a second opinion. A Medicare rebate is provided in this circumstance.
Test Specifications
Review of tissue by Congo Red Staining and examination under polarised light for the presence of amyloid
Immunohistochemical amyloid subtyping stains:
TTR, kappa, lambda, AA
Cost Medicare rebated if both a pathologist and clinician request review
Turnaround time 3-5 business days
Address Dr Patrick Hosking
Director of Anatomical Pathology
Level 5, Building B
Box Hill Hospital
8 Arnold Street
Box Hill VIC 3128
Phone 03 9895 3477
Fax 03 9895 3184
Note: these numbers are not for patients or general public enquiries
Sample requirements:
Tissue block and all stained slides
If the referring lab is cannot release tissue blocks, send the following unstained slides:
1x 4 micron thick unstained slide
4x 7micron thick unstained slides
(Please label which slides are which)
Document requirements:
Please include;
A copy of the original pathology report
The pathologist’s name and provider number requesting/consenting to the second opinion and/or additional immunohistochemistry
The pathologists’s authorised signature as per the request form.
The downloaded request form is applicable when the treating clinician and the pathologist (who provided the original opinion) agree upon a second opinion. A Medicare rebate is provided in this circumstance.
Test Specifications
Review of tissue by Congo Red Staining and examination under polarised light for the presence of amyloid
Immunohistochemical amyloid subtyping stains:
Standard : TTR, kappa, lambda, AA
Available on request : Fibrinogen, lysozyme, Apolipoprotein
Cost Medicare rebated if both a pathologist and clinician request review
Turnaround time 3-5 business days
Address Department of Anatomical Pathology
Princess Alexandra Hospital
199 Ipswich Rd, Woolloongabba QLD 4102
Email Amyloidosis@health.qld.gov.au for “Request for amyloid tissue review” along with original report, clinical information and the reason for review. Further instructions will be provided and tailored testing will be performed for each request.
Address Dr Jeremy Parry
Dept of Anatomical Pathology
Fiona Stanley Hospital
Murdoch Perth 6150
Phone: (08)6152 8449
Fax: (08)61528052
Note: these numbers are not for patients or general public enquiries
Sample requirements:
Tissue block and all stained slides
If the referring lab cannot release tissue blocks, please send the following unstained slides:
1x 4micron unstained section (for H&E)
7x4micron unstained sections on charged slides for immunohistochemistry (includes two spares)
1x7micron unstained section (for Congo red)
(Please label which slides are which)
Test Specifications
Examination of tissue sections with H&E and Congo red to identify and localise amyloid
Immunohistochemistry as required (amyloid A, amyloid P, TTR, kappa, lambda)
Cost Medicare rebated if both a pathologist and clinician request review
Turnaround time 3-5 business days
Other Tests
Address/Contact and test ordering
Go to https://www.mayocliniclabs.com to register an account and receive information
Sample requirements Formalin fixed tissue block
Test Name AMPIP- Amyloid Protein Identification, Paraffin, LC-MS/MS
Test specification
Laser dissection of amyloid deposits followed by tandom mass spectrometry analysis of the constituent amyloid protein
Cost ≅ AUD$2,000-$2,500 (not including freight)
TAT 10-14 days
Address Westmead Childrens Hospital
Molecular Genetics Laboratory
Hawkesbury Rd
Westmead, NSW, Australia, 2145
Phone 02 9845 3244
Fax 02 9845 3204
Email SCHN-CHW-MolecularGeneticsLaboratory
Sample requirements
5mL whole blood (EDTA), transport at room temperature
Request Documentation
Clinical information and type of genetic testing required (see below). Provide family’s inherited point mutation If requesting predictive testing.
Biller Information
If the Local Health District is to be billed provide ordering doctor’s name, provider number, address and cost code.
If biller information is not indicated the patient will be billed.
Test specifications
Types of gene testing
1. Hereditary amyloidosis full screen
PCR and bi-drectional Sanger sequencing
Genes tested: TTR exons 1-4 (ref. sequence:NM_000371.3) ,FGA (ref.sequence NM_000508.4), APOAI exons 3 and 4 (ref.sequence NM_000039.2), and LYZ exons 2 and 4 (ref.sequence NM_000239.2), FGA codons p.510 to p.630 in exon 5
Screening for mutations in these regions accounts for 94% of the known pathogenic hereditary amyloidosis variants
2. TTR gene testing
PCR and bi-directional Sanger sequencing of TTR exons 1-4.
Screening in this region detects 99% of pathogenic TTR variants.
3. Predictive testing
Predictive testing for a proband’s family’s specific gene mutation
Cost
1. Full screen $800
2. TTR gene testing $400
3. Cascade/predictive testing for known familial variant $250
These tests are not Medicare rebated
Address Westmead Children’s Hospital
Immunology Laboratory
Hawkesbury Rd
Westmead, NSW, Australia, 2145
Phone 02 9845 3323
Fax 02 9845 3324
Test Specifications
Serum Amyloid A Level
Performed by nephelometry
Specimen requirements
At least 500ul of serum
Can be stored for no more than 8 days at 2-8 degrees C or stored frozen for up to three months if frozen within 24 hours after collection.
Avoid repeated freeze-thaw cycles.
TAT 14 days
Cost ≅$40
This test is not Medicare rebated
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