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

Victorian and Tasmanian Amyloidosis Service (VTAS)

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

Mayo Clinic Laboratory, Rochester, USA

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

More information available here.

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

To make enquires or to leave website feedback please use the form below. We are unable to address personal  health queries through this channel. For personal health queries please use the contacts for AAN clinic centres and laboratories found at left.

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