The UKMH registry (UKMHR) was established in March 2015 as a resource centre to help patients and relatives, as well as health professionals and the public, understand more about the condition Malignant Hyperthermia, which is often known simply as ‘MH’.

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.

Anyone who has MH, or suspects they may have the condition, should sign up to the UKMHR so that we have up to date records of each person, as well as their relatives.

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The UKMHR also plays a role in supporting patients, relatives and health professionals as well as creating awareness and information about the condition. We do this through this website, the Patient Liaison Group, our general patient helpline and our emergency-only helpline for anaesthetists and clinicians.

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.”

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