THE NORTH AMERICAN MALIGNANT HYPERTHERMIA REGISTRY

Abstract

SUMMARY The North American Malignant Hyperthermia Registry acquires, analyzes, and disseminates patient-specific clinical and laboratory information on MH to scientific investigators and health professionals caring for MH susceptible patients. With the help of health care professionals throughout North America, the Registry has enrolled nearly 2200 individuals with a possible history of MH susceptibility. To date, Registry research efforts (1) helped create a MH clinical grading scale that will serve as a clinical case definition for the MH syndrome, (2) determined that a modification of the North American caffeine-halothane contracture test will produce a laboratory test with nearly 100% sensitivity and 78% specificity, and (3) demonstrated that 4% of patients suffering probable MH events died in spite of high dose dantrolene therapy and that 6% of patients treated with dantrolene experienced respiratory failure. The Registry has prepared more than 2000 MH Patient Reports for immediate release to health care professionals caring for patients with a history of possible MH susceptibility. Registry report forms and MH Patient Reports may be obtained by contacting the Registry office during normal working hours. The success of future Registry studies will remain heavily dependent upon the continued cooperation of health care professionals and MH susceptible individuals throughout North America.