National Haemophia Nurse Co-ordinator: Sister Ann Gilham
Other staff: Haematology, paediatric and medical registrars on rotation
The mission of the Haemophilia Comprehensive Care Centre is to provide a comprehensive clinical, diagnostic and research service to people with haemophilia and other congenital and acquired bleeding disorders in Johannesburg and to serve as a national referral centre of excellence for complex diagnostic workup and management of these patients.
The clinical and diagnostic service at the HCCC is provided primarily by NHLS Clinical haematologists and haematologymedical trainees with input from Johannesburg Hospital paediatricians, internists, othorpaedic surgeons, dentists, physiotherapists, occupational therapists and specialist haemophilia nurses. The clinic is a walk in centre open Monday to Friday with a formal Clinic day every Monday morning from 9h00 to 13h00. There is an on call service for the Clinic which is available after hours and on weekends. During the year under review there were 862 clinic visits, 47 hospital admissions and 35 new patients managed by the HCCC staff. The hospital visits have increased by almost 100 patients. Twelf synoviorthesis were carried out at the centre and in excess of 35 dental and surgical procedures were supervised using the centres protocols.
Teaching and training
The HCCC gives a clinical and practical dimension to the laboratory based haemostasis and thrombosis training of the haematology and medical registrars. All Haematology registrars rotate through and are trained at the centre. In addition, the centre has a cohort of experienced haematologists and haemophilia nurse specialists who are responsible for presenting an annual basic haemophilia nurses training course, advanced haemophilia nurse training course and patient homecare course. Particpants in these courses are from all provinces in South Africa as well as our neighbouring countries.
The following investigator initiated projects are currently ongoing in the HCCC
Molecular epidemiology of hepatitis C in haemophiliacs
The Efficacy of the use of ice as an adjunctive therapy in an acute bleeding episode in severe haemophiliacs
Management of early haemophilic synovitis with 90-Yttrium synoviorthesis.
Haemophilia inhibitor genetics study
Long term follow up of transfusion acquired HIV in a cohort of haemophiliacs
Long term follow up of haemophilic arthropathies
The HCCC staff continue to participate in two international clinical trials. Collaborative work is currently with the following groups
Prof A Krause ?department of Humna Genetics, NHLS
Prof Meiring- Department of Haematology and Cell Biology, Free State University Dr Howard Hughes ? Emory University, USA
Tel: +27 (0)11 717 1000
1 Jan Smuts Avenue
Johannesburg, South Africa