Amyloidosis Centres and Affiliate Clinics
The AAN Amyloidosis Centres and Affiliates run clinics which provide a multi-disciplinary service to type amyloidosis and provide management advice for all types of amyloidosis. These centres assist with the optimisation of amyloid specific therapies, run clinical trials and help to provide complex supportive care for individuals with amyloidosis. 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.
To view clinics in each state use the map below.
Use the map at left
to view clinics in your state.
Roll your mouse over the markers to reveal locations or click on each state for more location detail.
Northern Territory
There are currently no amyloidosis clinics
in the Northern Territory
New South Wales
- Monthly Multidisciplinary Amyloidosis Clinic
- Monthly Cardiac Amyloidosis Clinic
- Multidisciplinary Clinic attended by haematologists, cardiologists, neurologists, immunologists, genetic medicine specialists and supported by nephrology, immunology and oral medicine services.
Westmead Hospital
Contact/referrals:
Email: WSLHD-WAC-Correspondence@health.nsw.gov.au
Ph: 02 8890 7546
Fax: 02 8890 8907
- Monthly Multidisciplinary Amyloidosis Clinics, Thursday afternoon, Heart and Lung Clinic, St Vincent’s Hospital, Darlinghurst.
- Monthly Cardiac Amyloidosis Clinic, Thursday afternoon, Heart and Lung Clinic, St Vincent’s Hospital, Darlinghurst.
- Multidisciplinary Clinic attended by haematologists, cardiologists, neurologists and amyloid specific Clinical Nurse Consultant and supported by clinical genetics, nephrologists, ENT, radiologists and histopathologists.
St Vincents Hospital
Contact/referrals:
Email: amyloidreferrals@svha.org.au
Fax: 02 8382 2488
All referrals are triaged. We involve various Amyloidosis Specialists in the care of patients, depending on their presentation and clinical needs. We hold Monthly Multidisciplinary Amyloidosis Rounds attended by haematologists, cardiologists, neurologists, nephrologists, Nuclear Medicine and other specialists
Prince of Wales Hospital Affiliate Amyloidosis Clinic
Email: SESLHD-POWAmyloidMDT@health.nsw.gov.au
Tel: 9382 0484
Fax: 9382 0799
Address:
C/O Department of Cardiology
Level 3, Campus Centre
Prince of Wales Hospital
Barker St, Randwick NSW 2031
Victoria and Tasmania
- 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
Box Hill Hospital, Eastern Health, Melbourne
Contact/referrals:
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: 1300 342 255
Referrals:
All Amyloidosis (& Myeloma) referrals via electronic portal:
Patient Details (easternhealth.org.au)
Contact/referrals:
Undifferentiated or Suspected AL amyloidosis:
ATTN: Dr Matthew Rees
Email: haematologyreferrals@svha.org.au
Fax: 03 9231 2759
Suspected ATTR:
ATTN: Dr Elizabeth Paratz
Email: heartcentre@svhm.org.au
Fax: 03 9233 3333
Queensland
- Weekly amyloidosis clinic attended by a haematologist
- Weekly amyloidosis trial clinic
- Fortnightly mutidiciplinary amyloidosis clinics
- Weekly ATTR amyloidosis clinic
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
Western Australia
- Monthly Amyloid clinic
Contact/referrals
Sharon.McDonald2@health.wa.gov.au
Sandra.DeSausmarez@health.wa.gov.au
Ph: 08 6152 5100
South Australia
- 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
(preferred faxed contact for all new referrals and enquiries, via RAH Haematology Dept)
Ph: 08 7074 4100
- Fortnightly amyloidosis clinics run by two amyloid expert Cardiologists
- Clinics supported by a Genetic Cardiologist, Haematologists, Nephrologists, Neurologists and Cardiology Clinical Trials Department
Expertise in diagnostic endomyocardial biopsy, advanced cardiac imaging including cardiac MRI and genetic testing.
Contact/referrals
Located in SAHLN Cardiology Clinic in Suite 601.
Patient referrals to be faxed on 08 8204 4576
For more about what constitutes an AAN Amyloidosis Centre or an AAN Affiliate Amyloidosis Service and how to apply to be one or the other please see below
Introduction
The AAN welcomes and encourages all sites interested in providing the best possible care for all Australian amyloidosis patients to apply to become a part of the AAN. Together we can provide a networked diagnostic, clinical, research and education service for all our centres, affiliates, and our patients. Please apply today!
The AAN wishes to recognise, respect and work with all Australian sites active in the field of amyloidosis medicine who uphold our aims and vision. There is no fee for a site to be an AAN Centre or AAN Affiliated Service.
The Constitution of the AAN states its objects as follows:
- to provide training and education of medical professionals, patients and their carers regarding the diagnosis (including accurate sub-typing), treatment and management of amyloidosis of every type*.
- to undertake and promote research into the causes, diagnosis, treatments and management of amyloidosis and publishing the results of that research;
- to advocate, in partnership with patients with amyloidosis and medical professionals, to ensure equitable access to the best possible treatments for all persons suffering amyloidosis of any type in Australia and for there to be a greater understanding of what it is like to live with amyloidosis; and
- to enhance awareness and to promote the multi-disciplinary and collegiate management of the diagnosis and treatment of amyloidosis patients, including supportive care, to enhance the quality of life of patients of amyloidosis and related diseases.
The AAN welcomes and encourages clinical, diagnostic and research sites to apply to become an AAN Centre or AAN Affiliated Service. This is whether a site offers a comprehensive, multimodality service for a large metropolitan community or whether it provides a focussed service for a smaller rural community. Each type of service is valuable and together we can provide a network of services to advance the care for all amyloidosis patients Australia-wide.
This application process involves completing a Site Survey, designed to reflect your site’s resources, context, and model of care. The survey is simply a tool to assess whether a site is best defined as an AAN Centre or Affiliated Service. There will be a lot of variation among sites and this survey is designed to capture information. The questions do not state eligibility criteria. For example, a regional hospital service with a special interest in providing supportive care for amyloidosis patients which sees a handful of patients each month is equally eligible to be supported and networked as an AAN Affiliated Service as a metropolitan cardiologist dedicated to providing an accessible cardiac biopsy service for amyloidosis patients.
The aim is to work together with other AAN sites in a networked fashion to deliver the best care possible for all amyloidosis patients across Australia Examples of how the AAN does this already are by cross-referring patients for clinical trial therapy, cross-referring biopsies for typing, provision of clinical management advice to smaller sites patients’ and their treating teams.
* “all types of amyloidosis” encompasses those diseases resulting from the extracellular deposition of amyloid fibrils rather than the neurodegenerative diseases such as Parkinson’s disease and Alzheimer’s disease.
Of further interest is the International Society of Amyloidosis’ position statement on:
A collaborative approach to amyloidosis and a multidisciplinary care framework
Definitions: AAN Centre; AAN Affiliated Service
AAN Centres are quaternary referral centres that provide a comprehensive, specialised, in-depth diagnostic service alongside clinical management advice for all types of amyloidosis. An AAN Centre has proven experience in amyloidosis diagnostics and management and is active in research and education programs.
AAN Centres provide diagnostic services to accurately type the amyloidosis disorder and advise and facilitate access to the most appropriate therapy. AAN Centres do not necessarily provide the day-to-day treatment for every referred patient, but AAN Centres all provide quaternary level advice and support to enable patients and their local physicians to provide locally accessible, optimal care.
An AAN Centre provides support and education for patients and families, and referring medical team alike.
There will typically be one AAN Centre in each state, although this may vary according to a state’s population and geographic size.
AAN Centres also collaborate with each other to provide a nationwide, networked service. Each centre contributes in a critical way to the nationwide program that includes diagnostic, educational, advisory, advocacy, research and supportive activities.
Each AAN Centre has a multidisciplinary clinic and multidisciplinary team meeting with the required range and depth of diagnostic and clinical specialities to provide a comprehensive service for all types of amyloidosis including ATTR, AL, AA, localised amyloid and hereditary amyloidosis. AAN centres usually include (but are not limited to) specialists in haematology, cardiology, anatomical pathology, neurology, nephrology and radiology.
Each centre includes specialists with experience and expertise in amyloidosis e.g. Fellows or physicians who have worked or trained in international centres of expertise; are authors of amyloidosis research papers or guidelines published in peer-reviewed journals etc.
AAN Affiliated Services are services which can be diagnostic, clinical or research services (or a combination of these) with a specific interest in amyloidosis which do not deliver the full range of quaternary level services provided by an AAN Centre. An AAN Affiliated Service may focus on one type of amyloidosis or, may have a particular interest in amyloidosis but not have a dedicated amyloidosis clinic. An Affiliated Service may provide clinical or diagnostic services; act as a satellite site for clinical care or trials; or provide other ancillary services related to amyloidosis. Affiliated Services work collaboratively in partnership with AAN centres with the primary goal of improving the care of all patients with amyloidosis in Australia. Affiliated Services should be involved in the provision of support and education to patients with amyloidosis and their families.
AAN Affiliated Services have a dedicated interest in the care of patients with amyloidosis and this may include:
- Services focussed on one type of amyloidosis or one presentation of amyloidosis e.g. AL or ATTR amyloidosis, cardiac amyloidosis
- Provision of care for all types of amyloidosis but without progression to a multidisciplinary team amyloidosis clinic or multidisciplinary team diagnostic meeting
- A multidisciplinary amyloidosis clinic but without progression to caring for all types of amyloidosis
- A multidisciplinary diagnostic service but without progression to include a dedicated anatomical pathology or radiology service
- Regional centres dedicated to caring for regional patients with amyloidosis
- Amyloidosis clinical trial sites.
Founding AAN Centres
The Founding AAN Centres are:
- Westmead Amyloidosis Service
- Queensland Amyloidosis Centre
- Victorian and Tasmanian Amyloidosis Service
- Fiona Stanley Amyloidosis Clinic.
Application Process
We ask each applicant site to complete and submit a Site Survey designed to reflect the site’s resources, context and model of care. The survey is simply a tool to understand a site’s amyloidosis services to assess the fit as per the definitions of an AAN Centre or Affiliated Service. Over and above each site’s individual amyloidosis resources is their ethos in working together in a collaborative and networked fashion to deliver the best care possible for all amyloidosis patients across Australia.
The completed Site Surveys are considered by the AAN Membership Committee. The committee will review the site’s resources, context, model of care, and work practices and assess against the definitions of an AAN Centre or Affiliated Service. A recommendation will be made to the AAN Board. If required, the AAN may request an interview to discuss the Site Survey.
Each endorsed site will become a part of the AAN’s collaborative, supportive network of diagnostics, clinical care and research. Each site will be listed as a contact on the AAN website.
The AAN encourages all sites interested in providing the best possible care for Australian amyloidosis patients to apply to become a part of our network. We offer networked support in clinical, research and educational support to all our Centres and Affiliates.
APPLICATION FORMS available on request from admin@aan.org.au
