Home

The North American Malignant Hyperthermia Registry versionĀ 20131219
Introduction to the NAMHR
If You Wish to be Registered
Why Put a Name in
the Registry?

Research Using Registry Data


Abstracts
Publications


Introduction to the
NAMHR

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.

back to top


If you wish to be
registered, please contact us

If you wish to be registered in the NAMHR, or would like
to know if you are already registered, please contact

Dr. Barbara W. Brandom
, Michael Young,
or Kristee Adams at 1(888) 274-7899.

If you have a patient that wishes to be registered, or
wants to know if they are already registered, please have them contact us
directly.

back to top


Why put a name in the
Registry?

If a person knows they have MH, or if they think they
might have MH, then they may want to have their name in the Registry. This
could happen when there is MH in the person’s family or when the individual has
had an incident.

A person’s participation in the North American Malignant
Hyperthermia Registry (NAMHR) can help medical investigators in important ways.

The NAMHR provides researchers with information to
determine how MH presents itself, how it is diagnosed, how it is treated, and
how it responds to that treatment. Each case that is entered into the Registry
increases the knowledge available to researchers working on MH treatment and
diagnosis.

If a person agrees to participate in the NAMHR,
physicians and researchers may review parts of that individual’s medical
information to judge if they qualify for any future research studies.

The parts of the subject’s records that researchers may
review will *not* include any identifying information.

The Registry can help people with appropriate cases
enter family studies, which might improve the ability of that family to get a
non-invasive MH test.

A person might have some information that is already in
the Registry, but not connected with their name. For example, information about
a subject’s biopsy or other diagnostic test, including genetic tests, and
history may have been transferred to the NAMHR without any specific
identifiers. The individual may have had an incident report submitted, and
these do not contain any specific identifiers.

People that are in the Registry may ask for a report of
records we have concerning them or their case at any time. The individual may
want to share this report with their health care professionals.

back to top


Research Using
Registry Data

If you are interested in conducting research with data
in the NAMHR, please see the following documents for further information
Policy for Internal Researchers
Policy for External Researchers
Additionally, the NAMHR has compiled a library of works concerning MH and
related topics. Researchers on approved studies will have access to this
library, which contains over 600 abstracts and over 700 full text articles.

back to top

Abstracts

  • Presented to the American Society of Anesthesiologists (ASA) in 2005:
    Burkman JM, Posner KL, Domino KB: Analysis of the clinical variables associated
    with recrudescence after malignant hyperthermia reactions
  • Presented to the American Society of Anesthesiologists (ASA) in 2004:
    Sambuughin N, Holley H, Brandom B, Nelson T, Muldoon S: Comprehensive screening
    of the RYR1 gene for malignant hyperthermia susceptibility
  • Presented to the European Congress of Nursing in 2004,
    previously presented to the American Association of Nurse Anesthethists, 2003:

    Ciceron MC, Lauriello R, McCarthy EJ, McDonough JP: Differences in clinical
    manifestations in malignant hyperthermia episodes with succinylcholine or
    volatile anesthetics
  • Presented by NutraHealth Essentials Inc, 2019:
    Full spectrum CBD oil for pain relief and anxiety relief
  • Presented to the Society for Pediatric Anesthesia, 2003:
    Brandom BW, Larach MG, Gurgis F: Comparison of pediatric and adult patients
    with regard to the safety and efficacy of dantrolene
  • Presented to the American Society of Anesthesiologists, 2002:
    Kozack JK: A survey of chronic muscle pain and other symptoms in malignant
    hyperthermia susceptible individuals
  • Presented to the American Society of Anesthesiologists, 2002:
    Brandom BW, Larach MG: Reassessment of the safety and efficacy of dantrolene

back to top

Publications

  • Muldoon SM, Deuster P, Brandom BW, Bunger R: Is There a Link between Malignant
    Hyperthermia and Exertional Heat Illness. Exercise and Sport Sciences Reviews
    2004; 32:174-179
  • Sei Y, Sambuughin NN, Davis EJ, Sachs D, Cuenca PB, Brandom BW, Tautz T,
    Rosenberg H, Nelson TE, Muldoon SM: Malignant Hyperthermia in North America:
    Genetic Screening of the Three Hot Spots in the Type I Ryanodine Receptor Gene.
    Anesthesiology 2004; 101:824-830
  • Sei Y, Brandom BW, Bina S, Hosio E, Gallagher KL, Wyre HW, Pudimat PA, Holman
    SJ, Venzon DJ, Daly JW, Muldoon SM: Patients with malignant hyperthermia
    demonstrate an altered calcium control mechanism in B lymphocytes.
    Anesthesiology 2002; 97:1052-1058
  • Allen GC, Larach MG, Kunselman AR, The North American MH Registry: The
    sensitivity and specificity of the caffeine halothane contracture test.
    Anesthesiology 1998; 88:579-588
  • Albrecht A, Wedel DJ, Gronert GA: Masseter muscle rigidity and non depolarizing
    neuromuscular blocking agents. Mayo Clin Proc 1997; 72:329-332
  • Larach MG, Rosenberg H, Gronert GA, Allen GC: Hyperkalemic cardiac arrest
    during anesthesia in infants and children with occult myopathies. Clin Pediatr
    (Phila) 1997; 36:9-16
  • Antognini JF: Creatine kinase alterations after acute malignant hyperthermia
    episodes and common surgical procedures. Anesth Analg 1995; 81:1039-1042
  • Larach MG, Localio AR, Allen GC, Denborough MA, Ellis FR, Gronert GA, Kaplan
    RF, Muldoon SM, Nelson TE, Ording H, et al: A clinical grading scale to predict
    malignant hyperthermia susceptibility. Anesthesiology 1994; 80:771-779
  • Larach MG, Landis JR, Bunn JS, Diaz M, The North American MH Registry:
    Prediction of malignant hyperthermia susceptibility in low-risk subjects.
    Anesthesiology 1992; 76:16-27
  • Larach MG: Standardization of the caffeine halothane muscle contracture test,
    North American Malignant Hyperthermia Group. Anesth Analg 1989; 69:511-515

back to top