Introduction to the UKHCDO
The United Kingdom Haemophilia Centre Doctors’ Organisation is an association of medical practitioners who work within the Haemophilia Centre’s of England, Scotland, Northern Ireland or Wales and have an interest in the care of people with Haemophilia or other inherited bleeding disorders. The aims of the organisation are
To preserve, protect and relieve persons suffering from Haemophilia and other inherited bleeding disorders.
To advance the education of the medical profession, the nursing profession, professions allied to medicine and the general public in the knowledge of Haemophilia and other inherited bleeding disorders and their treatment.
To promote or assist in the promotion of audit and research into the causes, prevention, alleviation and management of Haemophilia and other inherited bleeding disorders and to disseminate the useful results of such research.
The UKHCDO is an organisation of doctors who manage patients with bleeding disorders. UKHCDO was established in 1968 to improve haemophilia care, research into bleeding disorders, their treatment epidemiology and complications and to facilitate healthcare planning.
UKHCDO established a secretariat and a national data-base (NHD) as early as 1978 and has produced annual reports and many publications from the data generated. Although the data-base and secretariat remained in Oxford since that time, the Executive Committee, advised by the Advisory Committee decided in May of 2002 that the data-base and secretariat should be moved to Manchester Royal Infirmary.
The data for the NHD was collected annually using a paper system with information regarding new registrations and death being reported as they occur. For this reason, the Data Management Working Party directed that the data-base be upgraded and national networked with the introduction of individually networked Haemophilia Centre management systems for real-time data downloading. Dr Rob Hollingsworth, Chartered Software Engineer designed this system with the assistance of the previous Data Manager. Dr Hollingsworth is based in the University Department of Haematology at CM&MC. This software development is now complete and in the process of being rolled out nationally.
It is anticipated that this software, when fully implemented, will permit the generation of more detailed reports.
The UKHCDO has been a registered charity since 1991.
An Executive Committee made up of elected officers and advised by a 34-person committee directs UKHCDO. The Executive Committee meets monthly via conference. The Advisory Committee meets with the Executive Committee three times a year (usually in London). The Executive Committee interacts directly with the DoH on a regular basis, as required.
Specific clinical and research areas are dealt with by relevant Working Parties. These produce published clinical guidelines, conduct research and data collection. They include the Data Management Working Party the Inhibitor Working Party the Musculoskeletal Working Party the Paediatric Working Party the Rare Bleeding Disorders Working Party the Von Willebrand Disease Working Party. Working parties generally meet every four to six months.
The Data management Working Party oversees and directs the National Haemophilia Database. An annual General Meeting of all the membership is held in September or October of each year.