About the Registry:
The North American MH Registry of MHAUS was established in 1987 and merged with the Malignant Hyperthermia Association of the United States in 1996 in order to bring together MH data under one organization and allow for greater support for critical MH research and clinical initiatives.
The Registry's goal is to acquire, analyze and disseminate patient-specific clinical and laboratory information of malignant hyperthermia susceptibility to scientific investigators and physicians caring for MH-susceptible patients. The Registry data is also used to conduct research into the epidemology, diagnosis and treatment of MH.
DOWNLOAD FORMS: To download one of the Registry Forms, click the "downloads" tab (top of page) at www.mhreg.org.
Objectives of the Registry are to:
- Maintain a central database of patients with MH susceptibility and similar syndromes. (With the patient's consent, specific patient identifiers are included in the Registry. Otherwise, data is entered anonymously.)
- Provide patients and health care professionals with current medical information concerning the MH susceptibility status of patients who consent to be registered.
- Provide database services to MH diagnostic referral centers for standardization and validation of MH diagnostic testing procedures.
- Investigate the epidemology of MH in order to improve diagnosis, treatment, and prevention of MH episodes.
- Give a registered patient the security of knowing that healthcare professionals caring for them will be able to obtain specific information on his/her MH susceptibility status.
As a patient, following are the possible benefits of participating in the NAMH Registry:
- Physicians caring for you or your family could have rapid access to information concerning your susceptibility to MH, by calling the Registry office. This will help you receive the treatment that can be most useful and safe if an episode of MH occurs.
- Collection of clinical information in this Registry will permit research into the causes, manner of inheritance, and most effective treatment of MH, as well as the safest means for anesthetizing patients with MH.
Advisory Council
| Michael G. Adragna, MD SUNY-Buffalo School of Medicine Buffalo, NY |
Antonel Olckers, PhD University of Pretoria Persequor, South Africa |
| Gregory C. Allen, MD Olympia Anesthesia Associates Olympia, WA |
Henry Rosenberg, MD Saint Barnabas Medical Center Livingston, NJ |
| Daniel Chartrand, MD, PhD Montreal Neurological Hospital Montreal, Quebec, Canada |
Nyamkhishig Sambuughin, PhD National Institutes of Health Bethesda, MD |
| Michael B. Gorin, MD, PhD University of Pittsburgh Pittsburgh, PA |
Timothy J. Tautz, MD University of California-Davis Davis, CA |
|
Gerald A. Gronert, MD |
Albert Urwyler, MD Universitätskliniken Kantonsspital Basel, Switzerland |
| Sheila M. Muldoon, MD Uniformed Services University of the Health Sciences Bethesda, MD |
Denise J. Wedel, MD The Mayo Clinic Rochester, MN |
Contact the Registry:
PHONE: (888) 274-7899
EMAIL: bwb+@pitt.edu
WEB: http://www.mhreg.org
Barbara W. Brandom, MD, Director
Related Links:
