Background
The UKMHR consists of a registry or database of c. 12,000 contacts, > 7,000 of whom who have been tested for MH at the MH Investigation Unit at St James’s Hospital in Leeds, since the date of the first confirmed diagnosis in 1970. The registry is now the largest database of its kind in the world and plays a key role in developing research about the condition.
The UKMHR is owned and managed by the MH Investigation Unit, which is based at St James’s University Hospital and part of the University of Leeds in the UK. It was formed when the British Malignant Hyperthermia Association (BMHA), a charity set up by Alison Winks, closed after 30 years of managing information for patients.
The Director responsible for the newly formed UKMHR is Professor Phil Hopkins, who is renowned globally for his research into Malignant Hyperthermia.
Commenting on the establishment of the UKMHR, Phil said; “The University of Leeds is privileged to take responsibility for developing the UKMHR into a new resource centre for MH. We are indepted to the work that has been undertaken by Alison Winks and the BHMA over the last 30 years and look forward to continuing their work and further developing awareness and understanding for the condition.”