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The North American Malignant Hyperthermia Registry
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Introduction
to the NAMHR
If
You Wish to be Registered
Why
Put a Name in the Registry?
Research
Using Registry
Data
Abstracts
Publications
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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.
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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 Jessica Fondy 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.
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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.
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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.
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Abstracts
- Presented to the American Society of Anesthesiologists
(ASA) 2008:
Larach MG, Allen GC, Brandom BW, Gronert GA,
Lehman EB. Temperature changes are not late signs of malignant
hyperthermia: A NAMH Registry of MHAUS Study
- Presented to the American Society of Anesthesiologists
(ASA) 2008:
Scientific Papers, in review. Larach MG,
Allen GC, Brandom BW, Gronert GA, Lehman EB. Serious complications
associated with malignant hyperthermia events: A NAMH Registry of
MHAUS Study
- Presented to the American Society of Anesthesiologists
(ASA) 2007:
Sambuughin N, Brandom B, Capacchione J,
Rosenberg H, Muldoon S. Toward updating the North American Malignant
Hyperthermia Mutation Panel
- Presented to the American Society of Anesthesiologists
(ASA) 2006:
Larach MG, Brandom BW, Allen GC, Gronert
GA, Lehman EB. Deaths associated with malignant hyperthermia
(1987-2006) ? A North American MH Registry of MHAUS Study
- Presented to the American Society of Anesthesiologists
(ASA) 2005:
Torp KD, Brandom BW, Capacchione JF, Voelkel
ML, Muldoon SM. Caffeine halothane contracture test and ryanodine receptor
type 1 analysis in patients who experienced MH episodes
- 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 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
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Publications
- Larach MG, Brandom BW, Allen GC, Gronert GA, Lehman EB.
Cardiac arrests and deaths associated with malignant hyperthermia
in North America from 1987 to 2006. Anesthesiology 2008; 108:603-11
- Newmark JL, Voelkel M, Brandom BW, Wu J. Delayed onset of
malignant hyperthermia without creatine kinase elevation in a
geriatric, ryanodine receptor type 1 gene compound heterozygous
patient. Anesthesiology 2007; 107(2):350-3
- Fink EL, Brandom BW, Torp KD. Heat stroke in the super-sized
athlete. Pediatric Emergency Care 2006; 22: 510-3
- Sambuughin N. Holley H, Muldoon S, Brandom BW, de Bantel AM,
Tobin JR, Nelson TE, Goldfarb LG. Screening of the entire ryanodine
receptor type 1 coding region for sequence variants associated with
malignant hyperthermia susceptibility in the North American
Population. Anesthesiology 2005; 102:515-521
- Sei Y, Sambuughin NN, Davis EJ, Sachs D, Cuenca B, 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
- 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
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