Dr Van Hove and Children’s Hospital, Colorado
Dr Van Hove has been working in the field of Nonketotic Hyperglycinemia (NKH) since 1991, and it has been his primary research subject since 1998.
There are currently severals ways NKH patients can participate:
Current Care Practices Study
Dr Van Hove and his team are currently developing a clinical study of children with NKH. This study is aimed at optimizing the current therapy to the best of our knowledge of today, and at measuring the most relevant clinical parameters. This will help inform best-in-class care standards, and provide insight into potential therapies.
In Person workup
NKH patients can support their work by visiting the team in the clinic at Children’s Hospital Colorado for a work up and donating a sample . Please contact either Linda at Linda.Polivka@childrenscolorado.org or Danielle at Danielle.Komlo@childrenscolorado.org for scheduling.
Should a child with NKH die, their families can donate their brain to the Brain and Tissue Bank at the University of Maryland, to help inform NKH progression.
More information available here.