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Parents of Infants and Children with Kernicterus

Organization: PICK

Country: USA

Forum: Patient engagement

PICK is a not-for-profit organization run entirely by volunteers who are parents of children who are affected by kernicterus – preventable brain damage caused by untreated jaundice in otherwise healthy newborns. It was founded in 2000. Their mission is to partner with the healthcare system to:

  1. prevent kernicterus through the establishment of a system-based approach for the management of newborn jaundice that includes universal predischarge screening
  2. provide comfort, support and information on treatment options for families of children with kernicterus
  3. establish a model for a family-centered, system-based approach for constructive parent/healthcare partnerships to address preventable disabilities.

PICK also works with clinicians and researchers to drive forward a research agenda to prevent and manage kernicterus. Their website offers educational resources for families affected by the condition and provides a network of peer support and advice.

PICK have worked with the National Quality Forum in the USA to classify kernicterus as a never-event and to grant increased funds for research and public education on the condition. In June 2002, PICK hosted a 3-day conference in Richmond, Virginia. 25 families with children with kernicterus from the United States and Canada attended alongside policy makers, patient safety experts, and nationally renowned researchers, including representatives from the Centers for Disease Control and the Joint Commission on Accreditation of Healthcare Organizations.

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