Anyone with a diagnosis of VHL or at risk of developing VHL, can be referred by their general practitioner (GP) or specialist to their local genetics centre. Because VHL is an inherited genetic syndrome, care for VHL is coordinated through the various genetics services. The UK is divided up into 13 regions, each of which has a Regional Clinical Genetics Centre. For further information on each centre please go to the web address:

http://www.bshg.org.uk/Directory/UKdirectory.htm The majority of the centres will be able to coordinate VHL screening for individuals either in a regional one-stop clinic or in conjunction with local specialists.

The three regional centres featured here have the greatest amount of experience and expertise with VHL in the U.K., and often serve in a consulting or supplementary capacity with other local teams.

Guy's Hospital, London

A one-stop multidisciplinary screening clinic, held 3 monthly, was established in January 1998. The disciplines represented at the clinic are Clinical Genetics, Neurology, Ophthalmology and Renal Medicine. Adults and children requiring VHL screening are offered an abdominal ultrasound scan, eye examination and neurological examination during an afternoon. Results are available the same day. A 24-hour urine collection is also arranged. MRI scans are arranged prior to these appointments so that results can be discussed. There is also the opportunity to discuss genetic issues if required.

*Family Day at Guy's Hospital*

Currently about 45 families are known to the clinic from the catchment area which covers South East London, Kent and West Sussex (population approximately 4 million).In November 2002 we held a VHL family day for our families, which proved very popular. Following a short presentation explaining the genetics of VHL and screening protocols we were able to answer questions and families had a chance to meet each other over an informal lunch.

Sally Watts, Genetic Counsellor/VHL screening clinic coordinator, Guy's Hospital, London SE1 9RT Tel: 020 7955 4648 sally.watts@gstt.sthames.nhs.uk

Churchill Hospital, Oxford

The Oxford service is led by Dr Susan Huson and covers a catchment area of 2.9 million people over four counties. We are treating about 30 known VHL patients (with proven mutations) and 40 more who are on long term follow up due to either a possibly VHL related tumour having been treated in their past or an affected family member.The approach we take is to run a register which involves yearly contact to ensure that our records remain up to date as well as a one-stop clinic where patients can meet with the genetic team (doctors and nurses), as well as undergo eye examinations, MRI scans of the abdomen and blood screens. Brain and spine MRI scans are arranged if the person is symptomatic, but are most commonly arranged by the neurological service as part of their routine follow up post brain/spine surgery.The one-stop clinic is now held 6 times per year, and has proven to be extremely popular. Results are given (as much as possible) on the day and all scans are reviewed one week later. Blood screen results are collated, and patients are then sent a final clinic letter to summarize the findings.

Peter Risby, Cancer Genetics CNS, Department of Clinical Genetics, Churchill Hospital. Old Road, Headington, Oxford OX3 7LJ England, U.K. Tel: +44 (0)1865 226019; Fax: +44 (0)1865 226011; Peter.risby@orh.nhs.uk

St. Mary's Hospital, Manchester

The protocol followed by the Manchester Genetic Centre is almost identical to that followed by Guy's and Oxford. We serve about 50 VHL families in a catchment area of 4.5 million people.Families are seen on an annual basis, and all the screening tests are carried out in the Eye Hospital, and Manchester Royal Infirmary, which are all part of the same complex, and therefore convenient for the family. Families can of course be seen at any time between their annual appointments if they so wish. All the families are on the genetic register and so are easy to follow-up.

St. Mary's Hospital, Hathersage Rd, Manchester M13 0JH. Dr. Fiona Lalloo, Consultant Clinical Geneticist, and Mrs. Carol Giblin, Genetic Counsellor, Department of Clinical Genetics. Tel:
+44 (0)161 2766322; Fax: +44 (0)161 2766145. carol.giblin@cmmc.nhs.uk

As printed in the VHL Family Forum 11:3, September 2003. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.