Information for Referring Physicians

Our services

We tailor our approach according to the type of amyloid and to patients’ particular problems. Wherever possible, we discuss with the referring physician, after which we re‑examine any available tissue biopsies. Clinical evaluation can usually be completed over 1‑2 days, during which hospital or hotel accommodation can be arranged. Investigations include:

• whole body SAP scanning
• blood and urine tests
• a detailed echocardiogram (ultrasound scan of the heart)
• DPD scanning
• cardiac MRI
• DNA analysis (on a blood sample)
• fat biopsy and bone marrow examination under local anaesthetic.

Treatment is usually administered at a local hospital or other regional centres in conjunction with the NAC. Some cases are managed by us and our colleagues at the Royal Free Hospital.

Most amyloidosis patients need long term surveillance, with 6 or 12-month specialist follow up in the short term. SAP scintigraphy and specialist cardiac MRI are required to monitor amyloid deposits. This information, together with tests such as the free light chain test for AL amyloidosis, helps to determine on‑going treatment.

We also provide patients and their families with counselling and information that may not be available elsewhere.

Referral letters should be addressed to one of the following consultants:

• Dr Oliver Cohen, Consultant Haematologist
• Professor Marianna Fontana, Senior Lecturer / Hon Consultant Cardiologist
• Professor Julian Gillmore, Professor / Hon Consultant Nephrologist
• Professor Helen Lachmann, Professor / Hon Consultant Nephrologist
• Dr Shameem Mahmood, Consultant Haematologist
• Dr Ana Martinez Naharro, Consultant Cardiologist
• Professor Ashutosh Wechalekar, Professor / Hon Consultant Haematologist
• Dr Carol Whelan, Consultant Cardiologist
• Dr Brendan Wisniowski, Locum Consultant Haematologist

Referrals for the 'fever' systemic autoinflammatory syndromes service should be addressed to:

• Professor Helen Lachmann
• Dr Charalampia Papadopoulou, Consultant Paediatrician

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 chain assays
• Renal and liver function, quantification of proteinuria
• Cardiac biomarkers such as NT pro-BNP and troponin
• Previous bloods which assess chronic inflammation such as CRP, ESR and WBC if inflammatory disorders are suspected.

Cerebral Amyloid Angiopathy

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

Chemotherapy Protocols for Haematologists

Please see below possible drug dose and frequency for different chemotherapy protocols for treatment of AL amyloidosis.

The suggested protocols are intended as a guide only; drug regimens vary substantially and are individualised for each patient. The actual regimes and protocols prescribed to each patient are at the discretion of the prescribing clinician.

• Low dose CVD protocol
• Intermediate dose CVD protocol
• Full dose CVD protocol