What is the AAN?2019-11-21T21:49:08+00:00

What is the AAN?

The Australian Amyloidosis Network is an amalgamation of four multi-disciplinary amyloidosis centres, dedicated to the diagnosis and management of Australian patients with all types of amyloidosis.

Each centre has a multidisciplinary clinic with doctors from different specialities with an interest and focus in caring for those with amyloidosis. Some of the doctors have worked for more than ten years in the field of amyloidosis and others have done clinical and scientific research, written papers and guidelines for medical journals, worked in international centres of expertise (such as the UK National Amyloidosis Centre) and spoken at domestic and international medical conferences.

Each centre has individual strengths and we established ourselves as a network in 2016 to pool our expertise and resources with the aim to advance the multidisciplinary, consensus-led and co-ordinated management of amyloidosis in Australia.

Working with the four centres, as a member of the AAN, is a patient advocate who is a medical social worker with personal, clinical and research experience in the care of amyloidosis patients and their families.

To optimise the;

  1. Accurate diagnosis and sub-typing of amyloidosis
  2. Education of medical professionals, patients and their carers
  3. Multi-disciplinary management, supportive care and quality of life of patients
  4. Clinical and basic research of amyloidosis
  5. Advocacy for patients to ensure that the best possible treatments are available for all

The AAN has an open, collegiate, team-based approach to the diagnosis and management of amyloidosis.

The AAN’s four Amyloidosis Centres acknowledge that there are other specialists throughout Australia providing medical care to amyloidosis patients. Each AAN centre is committed to working with these specialists to share knowledge, expertise, advice and support when required, to enable the best possible care for all amyloidosis patients, wherever they may live in Australia.

The AAN established several forums in order to share and promote amyloidosis resources, experience and knowledge in Australia.

  1. The monthly AAN teleconference

Specialists from the AAN centres and a patients’ and carers’ advocate (a medical social worker with clinical and personal experience in the treatment of amyloidosis) participate in a monthly nationwide teleconference discussion where there is a focus on:

  • Complex clinical cases
  • Patient and family support, education and advocacy

The AAN invites other Australian physicians to present their cases for discussion. To do so, please contact an AAN centre.

  1. The “Amyloidosis Workshop”

The first Amyloidosis Workshop for health professionals and patients was run by the Leukaemia Foundation Australia in 2005.

The AAN continued the workshops from 2017 with the now biennial Amyloidosis Workshop series. We are proudly committed to maintaining its original structure with both patient and health professional sessions, invited international experts as well as its touring nature.

This website is designed as a practical resource for Australian patients, their carers, doctors and allied health providers.

The information in this website is subject to continuing research, clinical experience, differences in opinions among authorities and the unique aspects of each individual situation.

Please note that we provide general health information and it is important to recognise that the circumstance of each individual will differ and be unique. As such the information on this website cannot replace the considered process of decision making made by specialist doctors which is necessary to provide the best tailored management plan for each individual patient and their particular circumstances.

Each patient and their physicians should exercise their own judgment with respect to the use of the AAN website and should carefully evaluate the currency, completeness, accuracy, reliability, suitability and relevance of the available information.

More information on this website’s Terms of Use

This web site is financially supported by the Neely and Rice families in memory of Dr Mervyn Neely, surgeon, who died of AL amyloidosis in 1998.

Contributors to this website in alphabetical order:

Dr Jay Baumwol,
Cardiologist, Perth

Dr Julian Cooney,
Haematologist, Perth

Dr David Farlow,
Nuclear physician, Sydney

Dr Simon Gibbs,
Haematologist, Melbourne

Dr Chi-Jen Hsu,
Cardiologist, Sydney

Dr Dariusz Korczyk,
Cardiologist, Brisbane

Dr Fiona Kwok,
Haematologist, Sydney

A/Professor Peter Mollee,
Haematologist, Brisbane

Mrs Pat Neely,
Medical Social Worker, AAN patient advocate

Dr Mark Taylor,
Immunologist, Sydney

Professor Liza Thomas,
Cardiologist, Sydney

Dr Michael Walsh,
Neurologist,  Brisbane

We also recognise with thanks all those patients and families who have contributed to this site.

To make enquires or to leave website feedback please use the form below.

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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 Friday morning clinic at Westmead Hospital

Clinic attended by haematologists, immunologists and neurologists, with support from cardiologists, rheumatologists and nephrologists

Provides genetic testing for hereditary amyloidosis

Contact/referrals:
Email: WSLHD-WAC-Correspondence@health.nsw.gov.au

Ph 02 9845 8738
Fax 02 8890 9820

Victorian and Tasmanian Amyloidosis Service, Melbourne
Weekly Monday morning clinic at Box Hill Hospital

Fortnightly multi-disciplinary team meeting with cardiologists, neurologists, nephrologists, radiologists and histopathologists, haematologists and gastroenterologists

Contact/referrals:
Email: simon.gibbs@monash.edu
Ph 1300 342 255

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

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

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

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

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 ≅$180 US (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