NKH Patient and Family Registry

Your child’s story is important. The more information researchers have, the higher the potential for safe and effective treatments to be rendered. Please consider joining the registry.

    Contact Information
    Patient Information
    Your child's gender
    Has your child been diagnosed with Nonketotic Hyperglycinemia (NKH) or Glycine Encephalopathy?
    Is your child deceased?
    Has your child shown any of the following symptoms? Please check if yes:
    SeizuresApneaHypotoniaChoreaAthetosisAtaxiaSpasticityPyramidal Tract SignsHyperreflexiaDystonia

    If your child was diagnosed at birth, did your child require ventilation?

    Does your child have as seizure disorder?

    Does your child have an intellectual disability, learning disability or are they developmentally delayed?

    Has your child met any of these developmental milestones? Please check those they have.

    Is your child taking sodium benzoate?
    Is your child taking dextromethorphan?

    Is your child taking any of the following medications?

    Is your child on the keto diet?

    Is your child on the blended diet?

    I have the a copy of the following reports/clinical notes, and would be willing to share them if requested:

    Please note: all information will be kept confidential, and will only be shared for the purposes of furthering NKH Research. You can request your data, or your consent for sharing be removed at any time, by emailing hello@nkh-network.org.