What is NAMHR?
The North American Malignant Hyperthermia Registry (NAMHR) was established in 1987 and merged with the Malignant Hyperthermia Association of the United States (MHAUS) in 1995 so that data on malignant hyperthermia (MH) could be stored in a site that is supported by one organization (MHAUS). This consolidation offers greater support for research initiatives.
For more than 15 years, the registry was under the direction of Dr. Barbara W. Brandom at Children’s Hospital in Pittsburgh, PA. Now the University of Florida Department of Anesthesiology has the honor of hosting the registry.
The existing registry consists of data submitted by:
- Biopsy center directors through a biopsy center’s conduction of MH susceptibility through caffeine halothane contracture tests (CHCT) in a de-identified manner or with patient consent
- Individuals who have registered themselves
- Individuals who have undergone genetic testing for MH susceptibility
- Anesthesiologists whose patients experience MH or MH-like events
- Family members of those diagnosed with MH
- Any person who thinks they had a MH episode and is able to provide the anesthetic and postoperative records