National PKU News was pleased to have our poster presented at the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit. This poster is one of many research projects to be informed by How Much Phe. In this case, we analyzed a year’s worth of anonymized diet records for those who use the Simplified Diet tracking features on How Much Phe. Our goals were to examine the percentage of foods tracked as simplified, their nutritional makeup, and the demographic profile of our simplified trackers. This data will also inform PKU News’ breakout session in collaboration with OSHU Dietitian Joyanna Hansen at the Spring 2021 meeting of Genetic Metabolic Dietitians International, which looks at gaps between patient & clinician approaches to and understanding of the Simplified Diet for PKU.

See the poster here and the supporting data sheet, here.