[Image: masthead]




24-HOUR MH HOTLINE: 800-644-9737

The North American Malignant Hyperthermia Registry of MHAUS


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:

  • Maintain a central database of individuals with MH susceptibility and similar syndromes. (With the person's consent, specific identifiers are included in the Registry. Otherwise, only de-identified data is entered.)
  • Provide information storage and analysis services to MH diagnostic referral centers for standardization and validation of MH diagnostic testing procedures, including genetic tests.
  • Investigate the epidemology of MH in order to improve diagnosis, treatment, and prevention of MH episodes
  • Give a registered person the security of knowing that there is a central repository of information concerning their MH susceptibility status.

see also

The mission of MHAUS is to promote optimum care and
scientific understanding of MH and related disorders.