Christine Brown

Response to Burgard et al

Wendy E. Smith, Barbara K. Burton, Christine Brown, Jennifer M. Malinowski et autres

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Phenylalanine hydroxylase deficiency diagnosis and management: A 2023 evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG)

Wendy E. Smith, Susan A. Berry, Kaitlyn Bloom, Christine Brown et autres

The PKU Patient Registry: Development of a patient-driven registry and initial outcomes

Lauren Youngborg, Christine Brown, Eileen Blakely, Olaf A. Bodamer et autres

A patient registry facilitates collection of data on a group of patients with similar conditions. While some registries collect clinician-input data, patient-entered registries prioritize the perspective of patients and families. To better support research for phenylketonuria (PKU), National PKU Alliance (NPKUA) launched …

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The Pku Patient Registry: Development of a Patient-Driven Registry and Initial Outcomes

Lauren Youngborg, Christine Brown, Eileen Blakely, Olaf A. Bodamer et autres

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Phenylalanine hydroxylase deficiency diagnosis and management: A 2023 evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG)

Wendy E. Smith, Susan A. Berry, Kaitlyn Bloom, Christine Brown et autres

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FOR PKU BY PKU, A PATHWAY TO PROGRESS: INTEGRATING PATIENT VOICE WITH RESEARCH ON ANXIETY AND DEPRESSION

Kendra Bjoraker, Ann Carlson, Caitlin Frerking, Melissa Bernzen Goulart et autres

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Self-reported neurobehavioral impact of phenylketonuria in adult PKU patient registry participants

Lauren Youngborg, Stephen Aselage, Christine Brown, Rhonda Connolly et autres

Entering Secure Psychiatric Settings

Christine Brown

This chapter begins with a description of medical research ethics committees in Britain, setting out their historical context and the workings of the current day system. It argues that insights gained by considering the ethics committee application as part of the ethnographic …

Medical Foods for Inborn Errors of Metabolism: History, Current Status, and Critical Need

Susan A. Berry, Christine Brown, Carol L. Greene, Kathryn Camp et autres

Successful intervention for inborn errors of metabolism (IEMs) is a triumph of modern medicine. For many of these conditions, medical foods are the cornerstone of therapy and the only effective interventions preventing disability or death. Medical foods are designed for patients with …

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Family reflections on phenylketonuria

Christine Brown

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Untreatable Personality Disorder: the Mental Health Act Loophole?

Christine Brown, Keith Lloyd

A framework for assessing outcomes from newborn screening: on the road to measuring its promise

Cynthia F. Hinton, Charles J. Homer, Alexis A. Thompson, Andrea Williams et autres

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