The NIH/NCATS GRDR Program
Global Rare Diseases Patient Registry Data Repository
Our NAMHR registry is a member of the GRDR program. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across all rare diseases and to develop novel diagnostics and therapeutics for patient benefit.
The North American MH Registry (NAMHR) was established in 1987 and merged with the Malignant Hyperthermia Association of the United States (MHAUS) in 1995 so that data on MH could be stored in a site that is supported by one organization to offer greater support for research initiatives. The Registry is currently directed by Dr. Barbara W. Brandom at Children's Hospital in Pittsburgh, PA.
The Registry's goal is to acquire, analyze, and disseminate case-specific clinical and laboratory information related to malignant hyperthermia susceptibility. Registry functions are consistent with HIPAA, OHRP, and IRB regulations. Registry data can be used to conduct research into the epidemology, diagnosis, clinical course, and treatment of MH. Each potential study must have IRB approval from its parent institution, and approval from our Scientific Advisory Committee.
Objectives of the Registry are to: