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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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