Suggestions for referrals to an AAN Clinic

Referral to an Amyloidosis Centre is suggested for anyone suspected, or proven on biopsy specimens, to have amyloidosis. The AAN clinics provide a multi-disciplinary service to type amyloidosis and provide management advice for all types of amyloidosis. These centres assist with optimisation of amyloid specific therapies, run clinical trials and help to provide complex supportive care for individuals with amyloidosis.

Please note that some forms of amyloidosis have poorer prognosis, as such, if you are considering referring a patient with a poorer prognosis subtype, such as suspected AL amyloidosis and cardiac involvement for example, we suggest making telephone contact with your local AAN centre to facilitate an expedited review.

In order to assist each centre to triage referrals we would appreciate if the following information could be provided in the referral:

  • Serum electrophoresis, immunofixation and serum free light chains.
  • Urine electrophoresis and immunofixation
  • Urinary protein quantification – spot or 24-hour urine collection
  • NTproBNP and Troponin
  • ECG
  • Echocardiogram, preferably with GLS

In addition to the above, if your patient has had any of the following investigations, please forward the reports for our reference:

  • Nerve conduction studies
  • MRI Spine
  • Biopsy of any site
  • Genetic testing

To assist with which speciality team the individual should be prioritised to see, please provide information regarding:

  • Symptom clusters – cardiac, renal, neurological etc
  • Family history
  • Degree of impairment

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