The Robert Gregory Alkaptonuria Centre (NAC)

The Robert Gregory Alkaptonuria Centre (NAC) was established by the NHS National Specialised Services Commissioning Group from April 2012 to provide assessments and treatments for patients with alkaptonuria (AKU). It is based at the Royal Liverpool University Hospital and run by the Department of Clinical Biochemistry and Metabolic Medicine.

The Royal Liverpool University Hospital has been researching and managing AKU since 2003. In recognition of the unique expertise that exists in Liverpool, the NHS National Specialised Services has designated the hospital as the centre to host the NAC. The lead clinician at the NAC is Dr L Ranganath, a Consultant in Clinical Biochemistry and Metabolic Medicine.

The NAC is located at:

Ward 9B

Royal Liverpool University Hospital,

Prescot Street,

Liverpool

L7 8XP, UK

The NAC will:

· Provide a single national centre of expertise for comprehensive assessment of AKU patients.

· Deliver expert one-stop care that will enable monitoring of disease and treatment by an experienced multidisciplinary team.

· Offer and commence effective disease modifying therapy for AKU patients employing nitisinone.

· Allow access to expert surgical and medical assessment.

· Make available an urgent review of health problems if clinically required.

· Formulate integrated, holistic management plans for patients that will be communicated to the local healthcare providers. This will be supported with on-going liaison and expert advice to maximise the extent and efficacy of local clinical management.

Referral to NAC:

All those over the age of 16, and have a proven diagnosis of AKU, are eligible to attend the NAC. Referral will generally be via the patient’s GP.