Skyler Jackson, Data Analyst, will present an abstract entitled Methodologies That Lead to Conceptual Strength and Representation in Rare Disease Qualitative Research at the 16th Annual WORLDSymposium.

A rare disease, by definition, affects few, geographically disparate individuals. Oftentimes quantitative clinical trial endpoints do not capture the important impacts a therapy might have. Qualitative data, in the form of patient voice, is often captured to better understand patient experience and life impacts. The methodologies presented exemplify ways to derive meaning from small sample sizes and equally important qualitative metrics.

If you would like to learn more, the WORLDSymposium will be held at the Hyatt Regency Orlando in Orlando, Florida, from Monday, February 10 through Thursday, February 13, 2020. Our abstract will be published in the peer-reviewed “Lysosomes” issue of Molecular Genetics & Metabolism, February, 2020 and on the WORLDSymposium mobile app. Click here for more information on the WORLDSymposium.