Studies and Research

you can participate in to make a difference!

Two Research Opportunities to Help Improve PKU 

You can participate at home and be compensated for your time and effort. 

New Online Research: Cognitive and Emotional Health in PKU

Dr. Shawn Christ and colleagues at the University of Missouri are currently seeking participants for multiple new research projects aimed at developing better tools for assessing cognitive and psychological health outcomes in individuals with PKU. 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 tool for better capturing 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 years & older) with phenylketonuria (PKU) from Canada or the U.S., and provide monetary compensation for participation. For more information or to volunteer to participate, please contact Tess Fogelberg (573-884-8109;

To download a PDF of the below image click here

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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