Centre for Amyloidosis and Acute Phase Proteins
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National Amyloidosis Centre
Clinical Staff
| Head/Clinical Director | Professor Philip Hawkins | +44 (0)20 7433 2815/2816 |
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Emeritus Professor/Consultant |
Professor Sir Mark Pepys |
+44 (0)20 7433 2801 |
| Senior Lecturers/Consultants | Dr Julian Gillmore | +44 (0)20 7433 2726 |
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Dr Helen Lachmann | +44 (0)20 7433 2804 |
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Dr Ashutosh Wechalekar | +44 (0)20 7433 2758 |
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Dr Carol Whelan | +44 (0)20 7433 2875 |
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Clinical Fellows |
Dr Sanjay Banypersad |
+44 (0)20 7433 2823 |
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Dr Jason Dungu |
+44 (0)20 7433 2770 |
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Dr Shameem Mahmood |
+44 (0)20 7433 2823 |
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Dr Jenny Pinney |
+44 (0)20 7433 2823 |
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Dr Christopher Venner |
+44 (0)20 7433 2823 |
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Clinical Research Nurses |
Thirusha Lane (Lead) |
+44 (0)20 7433 2759 |
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Darren Foard |
+44 (0)20 7433 2714 |
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Lisa Rannigan |
+44 (0)20 7433 2832 |
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Nicola Stewart |
+44 (0)20 7433 2759 |
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Clinic Coordinator |
Eleanor Pyart |
+44 (0)20 7433 2738 |
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Clinic Nurse |
Annie Hughes |
+44 (0)20 7433 2730 |
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Academic PA to Consultants |
+44 (0)20 7433 2816 |
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Unit Secretaries |
+44 (0)20 7433 2798/2811/2816 |
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Appointments |
Ramon Lamarca |
+44 (0)20 7433 2813 |
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Transport & Accommodation |
+44 (0)20 7433 2812 |
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General Enquiries |
+44 (0)20 7433 2725 |
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Fax |
+44 (0)20 7433 2817 |
The National Amyloidosis Centre is the only centre in the UK specialising
in amyloidosis. It is funded centrally
by the NHS and is part of University College London Centre for Amyloidosis and Acute Phase
Proteins, one of the world’s leading centres for amyloid research. The National Amyloidosis Centre provides a
diagnostic and management advice service for the UK’s national
caseload of patients with all types of amyloidosis (and
related disorders) other than Alzheimer’s disease, although its research
programme does include the latter. The
Centre has “state of the art” clinical and research facilities, and a team of
highly qualified clinical, research and support staff. We pioneered scintigraphic imaging (SAP
scanning) of amyloid as a quantitative diagnostic procedure and provide a
comprehensive clinical service for patients with all types of acquired and
hereditary systemic amyloidosis. We evaluate nearly 500 new patients with
amyloidosis each year and have lately expanded the service to include patients
with periodic fever syndromes.
There are three main types of systemic amyloidosis – AA, AL and hereditary - which are described in more detail here. Systemic AA amyloidosis occurs in up to 5% of patients with chronic inflammatory diseases, most commonly rheumatoid arthritis. Systemic AL amyloidosis occurs in a small proportion of patients who have an underlying plasma cell dyscrasia. Unfortunately, both AA and AL amyloidosis cause rather non-specific symptoms, and diagnosis is often delayed until many investigations, often culminating in a tissue biopsy, have been performed. Systemic AL amyloidosis is now two or three times more common than AA type in the UK.
We provide a diagnostic and management advisory service for patients with systemic AA, systemic AL, hereditary systemic and localised amyloidosis (not including Alzheimer’s disease). Our approach to each patient with amyloidosis is tailored individually to the type of amyloid and to their particular problems. Wherever possible, patients are discussed with the referring physician, after which we re-examine any available tissue biopsies. Clinical evaluation of patients can usually be completed over 1-2 days during which time hospital or hotel accommodation can be arranged. Investigations include whole body SAP scanning to establish the distribution and quantity of amyloid throughout the body, blood and urine tests, a detailed echocardiogram (ultrasound scan of the heart), and specific additional tests that might include DNA analysis (on a blood sample), and a bone marrow examination under local anaesthetic. Previously obtained histological samples are reviewed and immunohistochemical typing of amyloid is performed.
Treatment is usually administered at patients’ local hospitals or at other regional centres in conjunction with advice from and reviews at the National Amyloidosis Centre. A small proportion of cases are managed directly by ourselves at the Royal Free Hospital. Patients can be directly referred to Dr Ashu Wechalekar for treatment of AL amyloidosis at the Myeloma and Dysproteinaemia Clinic at the Department of haematology at the Royal Free Hospital.
Most patients with amyloidosis need long-term surveillance, with six-monthly or annual specialist follow up in the shorter term. Follow up SAP scintigraphy is the only means of quantitatively monitoring the amyloid deposits, and this information helps determine ongoing requirements for treatment. A careful balance is required in each patient between administering sufficiently ‘strong’ treatment, and minimising adverse effects. Another important role of our unit is to provide patients and their families with counselling and information that may not be available elsewhere.


