An Unexpected Discovery

Since the launch of the UMB Data Catalog one year ago, the HS/HSL’s DC team has worked to create records reflecting the diversity of studies undertaken by researchers in the University’s schools of medicine, nursing, pharmacy, dentistry, and social work.  As a result, the datasets curated thus far range from foster parent experiences with Maryland’s court process to a collection of pharmaceutical clinical study reports on neuraminidase inhibitors for treating influenza to pre-ART HIV care outcomes in adults in Kenya and Tanzania. Working with our researchers has been a rewarding experience which, on occasion, has led to unexpected discoveries.

Recently, through correspondence with a faculty member in the school of medicine, we learned of the existence of a highly specialized resource. Since 1993 researchers in the SOM’s Division of Endocrinology, Diabetes and Nutrition have been studying the Old Order Amish (OOA) community in Lancaster County, Pennsylvania. The current population of approximately 35,000 individuals is directly descended from a small number of Anabaptist Christian founder families who immigrated to the United States in the late 1700’s. Their simplistic lifestyle and common lineage are ideally suited for epidemiological, genetic, and other health-related investigations. The Amish Complex Genetic Disease Database is the result of over 2 decades of research associated with this distinctive population. Data has been compiled from over 7,000 volunteers who have participated in one or more studies in a variety of investigational areas including diabetes, longevity, whole genome sequencing, blood pressure, and osteoporosis. Funded by a series of grants, work with the Amish over the last 20+ years has resulted in more than 200 papers the majority of which utilize the information accumulated in the database.

This is a prime example of a unique resource the significance of which is now highlighted by the metadata in its descriptive record. Through the UMB Data Catalog the visibility of the Amish Complex Genetic Disease Database has been increased providing opportunities for data re-use and future collaborations.