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Please note that information about our Histology testing service can be found here and information about our Genetics testing service can be found here. The information contained on this page is only for the referral of patients to our service.
Referral letters for the amyloidosis service should be addressed to one of the following consultants:
- Dr Oliver Cohen, Consultant Haematologist
- Professor Marianna Fontana, Hon Consultant Cardiologist
- Professor Julian Gillmore, Hon Consultant Nephrologist
- Professor Helen Lachmann, Hon Consultant Nephrologist
- Dr Shameem Mahmood, Consultant Haematologist
- Dr Ana Martinez Naharro, Consultant Cardiologist
- Dr Sri Ravichandran, Consultant Haematologist
- Professor Ashutosh Wechalekar, Hon Consultant Haematologist
- Dr Carol Whelan, Consultant Cardiologist
Please include the following details in the referral:
- Patient contact details, including full address, email and telephone number(s).
- Name and full contact details of referring consultant and/or GP.
- Any recent biopsies including bone marrow (date and hospital where performed) and a copy of the final biopsy report.
- Results of previous imaging (date and hospital where performed) and a copy of the final report:
- Echocardiogram, DPD or other bone scans, Cardiac MRI, CT or CT PET scan results, Skeletal survey.
- Any implanted metal work or devices such as pacemakers or ICD and if they are CMR compatible.
- If the patient has organ failure details of dialysis or organ transplantation.
- Relevant blood tests, in particular:
- Serum immunoglobulins, serum and urine electrophoresis and immunofixation and serum free light chan assays
- Renal and liver function, quantification of proteinuria
- Cardiac biomarkers such as NT pro-BNP and tropnin
- Previous bloods which assess chronic inflammation such as CRP, ESR and WBC if inflammatory disorders are suspected.
Referral letters for patients with ATTR cardiac amyloidosis to be considered for tafamidis treatment should be addressed to one of the following consultants:
- Professor Marianna Fontana, Hon Consultant Cardiologist
- Professor Julian Gillmore, Hon Consultant Nephrologist
- Dr Ana Martinez Naharro, Consultant Cardiologist
- Dr Carol Whelan, Consultant Cardiologist
Please include all the following details in the referral:
- Patient contact details, including full address, email and telephone number(s)
- Name and full contact details of referring consultant and GP (including GP postcode)
- Latest clinic letter with comorbidities & medication
- Latest blood tests
- renal profile (actual results & date)
- liver profile (actual results & date)
- NT-proBNP (actual results & date)
- Serum IF, urine IF (actual results & date)
- Serum free light chain results (actual results & date)
- Confirmation that biopsy diagnosis has already been made with amyloid typing performed at NAC or if biopsy performed within last 5 years but not typed at NAC - biopsy site, date of biopsy, and hospital where performed and a copy of the final biopsy report
- Results of previous imaging (date and hospital where performed) and a copy of the final report:
- Latest Echocardiogram (report in full & date)
- DPD or other bone scans (report in full with Perugini grade and date)
- Latest Cardiac MRI if performed (report in full & date)
- TTR genotype (report in full if not done at NAC)
Provision of the full data set in the referral will enable early assessment, potentially via remote consultation and prescription of tafamidis to eligible patients.
Referrals for the systemic autoinflammatory syndromes service should be addressed to:
- Professor Helen Lachmann, Hon Consultant Nephrologist
- Dr Charalampia Papadopoulou, Consultant Paediatrician
This service is commissioned by NHS England Highly specialised services to diagnose rare genetic causes of autoinflammation and to provide biologic therapies for the treatment of Colchicine resistant Familial Mediterranean Fever (CrFMF), TNF receptor Associated periodic syndrome (TRAPS), Cryopyrin Associated Periodic Syndrome (CAPS), Mevalonate Kinase Deficiency (MKD), Deficiency of Adenosine Deaminase 2 (DADA2), some Interferonopathies and Schnitzler’s syndrome.
Requirements for clinical referral:
1. Evidence of inflammation demonstrated by significantly elevated CRP, SAA or raised WBC and ESR with symptoms.
2. Any family history of similar symptoms or AA amyloidosis.
3. In patients with suspected acquired autoinflammatory disease full details of:
a. Previous imaging with reports.
b. Biopsies with reports.
c. Previous treatment attempts with medication, dates and outcomes.
d. Blood work including auto antibodies, haematology work up and infectious work up.
4. In patients with suspected pericarditis evidence that they fulfil European Society of Cardiology (ESC) criteria for recurrent idiopathic pericarditis including imaging reports and that they have been started on prophylactic colchicine
5. Full details of all teams involved in the patients current care. Referred patients must remain under the referring team. Patients without ongoing local care arrangements will not be accepted for national expert review.
Genetic testing for autoinflammatory disease can be requested directly without a clinical referral using:
The service does not provide emergency, nor routine secondary care and all patients must remain under shared care arrangements with their local referring teams.
Send referrals to:
National Amyloidosis Centre
Royal Free London NHS Foundation Trust
Pond Street
London NW3 2QG
Email: rf.amyloidosisadmin@nhs.net
If you wish to check availability of appointments please contact:
Mr Rizwan Shaukat
Tel: 020 7433 2732
Email: rf.amyloidosisappointments@nhs.net
If you wish to discuss any clinical issues prior to the referral please contact:
Amyloid Centre Nurse help line on: 07790 989695
Cerebral Amyloid Angiopathy
Please note that the NAC does not have expertise in the investigation/management of cerebral amyloid angiopathy. If that is the suspected diagnosis please consider referral to:
Professor David Werring, Comprehensive Stroke Service, National Hospital for Neurology & Neurosurgery, Queens Square, London, WC1 N3BG. uclh.stroke.admin.nhnn@nhs.net