Contact Us

Sponsor

National PKU Alliance
1802 Vernon Street NW PMB2389
Washington, DC 20009
www.npkua.org

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Registry Contact

Kelsey McQueen, MS, GC
registry@npkua.org

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IRB

North Star Review Board
https://learningirb.org/
info@northstarreviewboard.org

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Social Media

PKU Patient Registry | Facebook
PKU Patient Registry | Instagram
PKU Patient Registry | Twitter
PKU Patient Registry | LinkedIn
Connect with the NPKUA

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Institutional Review Board (IRB)

An Institutional Review Board, for the purpose of protecting your/the Study Participant’s rights, has reviewed this registry. An Institutional Review Board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies. For questions about your rights as a Study Participant in this Registry or to discuss other study-related concerns or complaints with someone who is not part of this Registry team, you may contact North Star Review Board at https://learningirb.org.

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Visit the National Organization for Rare Disorders home page at rarediseases.org.