Studies and Research

you can participate in to make a difference!

Volunteers Needed for Psychological Research

Dr. Shawn Christ and the Clinical Neuropsychology Laboratory at the University of Missouri are seeking volunteers to participate in new research studies. Research by Dr. Christ and his research group focuses on better understanding the effects of both elevated Phe as well as lowered Phe levels in the body on psychological and neurological function in individuals with PKU.

Within this context, they are currently seeking participants for several exciting new projects aimed at developing better tools for assessing cognitive and psychological health outcomes in everyday life in individuals with PKU. These tools will help to determine if investigational and new treatments for PKU are associated with improvements for individuals with PKU beyond just lowering their Phe levels. The goal is to leverage recent technological advancements and move beyond traditional in-person cognitive tests to develop new tools that can be administered remotely (e.g., via cell phone) and are specifically designed with PKU in mind. One such project involves the use of a customized cell phone-based app to assess in-the-moment symptoms of potential psychological distress. Another project is aimed at developing a new measure to capture day-to-day neurocognitive symptoms of elevated Phe.  Both studies can be done remotely (no need to come in person), are open to adults (18 yrs & older) with PKU, and provide monetary compensation for participation. For more information or to volunteer to participate, please contact Tess Fogelberg (

University of Missouri-Columbia by Dr. Shawn Christ.

Edge Hill University, UK. - Researcher: Rachel Wilson as part of a Masters by Research (MRes) in collaboration with Vitaflo

Survey invitation: Your opinion counts!

We are trying to learn more about what matters most to people with PKU as they get older and if protein substitutes/formulas could be improved.

If you have PKU, are 30 years of age or above, currently live in Australia, Canada, Sweden, The Netherlands, United Kingdom or United States of America you are invited to take part in an online survey.

What will I need to do?

Please see the attached flyer and email Rachel Wilson on: to find out more.

We’d like to say thank you by offering an amazon voucher for £20 GBP / $25 USD / $35 CAD / $35 AUD / €25 EUR / 250kr SEK to each person who completes the survey. The number of vouchers is limited to 100. The survey will close in spring 2023 or when all vouchers have been claimed, whichever is sooner.

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