Mitochondrial Myopathy Clinical Research

This is part of a series of posts by recipients of the 2021 Career Services Summer Funding Grant. We’ve asked funding recipients to reflect on their summer experiences and talk about the industries in which they spent their summer. You can read the entire series here.

This entry is by Tina Luo, COL ’24

This summer, I received a great opportunity to work and get trained in a clinical research project entitled Natural History of Mitochondrial Myopathy and carried out by Mitochondrial Medicine at the Children’s Hospital of Philadelphia. The research had the goal of discovering the pattern and progression of mitochondrial myopathy by gathering substantial amounts of patient data and relevant information in medical records, so that researchers could gain a deeper understanding of this rare genetic disorder.

This clinical research provided me the opportunity to learn and develop skills primarily in the review of medical records in Epic, the electronic system storing all patient medical records; the extraction of relevant patient data from Epic to then enter them into RedCap, a web application for building and managing online surveys and databases; and the compilation of data in preparation for analysis by statisticians. In addition to data entry and analysis, I was able to learn about the objective measures conducted by our physical therapist to measure myopathy and to learn the knowledge related to the genetic mutation that corresponds to each type of mitochondrial disease.

On a daily basis, I had to make sure all numbers and data entered were relevant and accurate. Sometimes, that entailed managing hundreds of numbers and extracting useful information from a large amount of medical records. Since every subject had different conditions and the medical records can sometimes extend to a few years back, it was easy to miss relevant information. To prevent such mistakes from impeding future analysis, I always double checked every number and every piece of data entered. After about a week of adjustment, I was able to carry out my tasks error-free. By the end of the summer I completed data entry for thirty subjects, each with twenty sections and multiple sub-sections. In addition, I completed four extra sections for a total of sixty-one subjects and spent an additional two weeks rechecking all data entries I entered.

Through this position, I have realized the importance of precision and the amount of effort required to aim for error-free data extraction and entry processes. Not only have I gained a deeper understanding of the disease itself, I have also developed a more detail-oriented, patient mindset that will be useful in any research tasks that require meticulous work.

On top of gaining valuable research experience and skills, I indirectly witnessed the suffering and hardships of many patients experiencing this disease. Since it is a genetic disorder currently without a cure, patients with the disorder tend to suffer from numerous chronic illnesses throughout their lifetime, thus greatly damaging their quality of living. An unforgettable moment happened when a deceased notification popped up as I opened the medical record of the first deceased patient I encountered. That was the point where I felt a calling to contribute my best efforts into medical research in hope to make a positive impact in patient lives. In the future, I hope to continue my passion in medical research and continue participating in projects that have the potential to bring beneficial change to people in need.

By J. Michael DeAngelis
J. Michael DeAngelis Senior Digital Resources Manager, co-host CS Radio