My name is Brooke DiIanni and I am a graduate student in the nurse anesthesia program at the University Pittsburgh. As part of our didactic curriculum we are afforded the opportunity to work side by side with a researcher and become personally involved with a research entity. Malignant Hyperthermia (MH) is a disease process that we are introduced to early in our anesthesia education; however is not commonly seen clinically. Thus, when a classmate referred me to a volunteer student research position at the North American Malignant Hyperthermia Registry (NAMHR), I decided this was the perfect opportunity to learn more about the disease process, anesthesia management, and see the inner workings of a research organization first hand.
Throughout my research practicum, I worked closely with the Registry director, Dr. Barbara Brandom, as well as her administrator, Kristee Adams as they demonstrated the exemplary dedication that goes into running the Registry. During these 60 hours, I heightened my awareness of malignant hyperthermia research by studying key articles and videos produced by researchers in conjunction with the Malignant Hyperthermia Association of the United States (MHAUS) and NAMHR. Furthermore, I examined landmark case data supplied by the NAMHR database to see how these cases support current management guidelines or the need for additional research.
An extensive amount of my participation entailed listening to telephone calls that come into the Malignant Hyperthermia Hotline from a myriad of healthcare professionals. These calls are answered 24-hrs a day by anesthesiologists who can help manage an acute malignant hyperthermia crisis, discuss potential differential diagnoses, or simply answer questions about how to best prepare for an upcoming anesthetic for a person identified to be MH susceptible. I then transcribed these phone calls into the REDCap software program and compared this information with the Adverse Metabolic or Muscular Reaction to Anesthesia (AMRA) forms to fill in missing information within the database.
Another large portion of my role at the Registry was reviewing the AMRA forms themselves to evaluate whether the information provided was significant for a Malignant Hyperthermia episode, entering this data into the NAMHR software program, and performing junior reconciliation, in which data previously entered is reviewed by for accuracy and completeness prior to final review by Dr. Brandom. In addition, I simplified the contact information for Registry members by helping to synchronize Registry identification numbers to existing names, addresses, and telephone numbers within a spreadsheet, which will make it easier to identify and reach out to members with questions and correspondence. Lastly, I gathered information specific to genetic susceptibility and diagnostic testing to construct a PowerPoint presentation, which I presented to my course faculty - Dr. Richard Henker, Dr. Barbara Brandom, and fellow classmates.
From start to finish, my experience at NAMHR was extremely beneficial to my anesthesia education and exceptionally rewarding. Because of my involvement, I am a more knowledgeable anesthesia provider, more equipped to take care of malignant hyperthermia susceptible patients, and a tremendous clinical resource for my colleagues. I cannot show enough appreciation to Dr. Brandom and her staff for the exceedingly important work they do everyday to maintain the Registry and for taking the time to educate a novice student registered nurse anesthetist on this rare but vital disease process.