Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand the caregiver’s experience when it comes to managing behavior in children with neurologic conditions.
For many families with children and young adults with HH – dealing with the behaviors can be even more challenging than the seizure activity!
CNF will share anonymized information (no names will be associated with the responses) from this survey with health care providers, so they are better able to serve children who exhibit disruptive and harmful behavior related to a neurologic condition.
- We welcome participation from primary caregivers of children with HH
- Children, for the purpose of this study, would be birth through 21 yrs old
- This survey should only take 10-15 minutes to complete.
- Only one survey should be completed for each child.
- Children under the age of 18 should not complete this survey. Instead, an adult should complete this survey on their behalf.
We respect your privacy and all information obtained from this survey will be presented in summary form, grouped with other responses so that no one individual can be identified.
You can access the survey at: https://www.surveymonkey.com/r/HopeforHH
Thank you for supporting this research and helping us all understand the HH Syndrome better and improve care for children with disruptive and harmful behaviors.
Hope for Hypothalamic Hamartomas (HH) and The Child Neurology Foundation