Hope For Hypothalamic Hamartomas - February 2022
HH Sleep Study – Request for Participation
Hope for HH is reaching out once again to all families and caregivers of children with HH between the ages of 1 and 15 years old - with an incredible opportunity to share their experiences and have their voices heard!

A common complaint we all have as HH caregivers is that the clinicians and scientists don’t understand what our loved ones are going through! So, when we have the opportunity to educate professionals through our real-life experiences – we really do want to encourage everyone to participate. If you have already participated, we sincerely thank you for doing so.

The survey should only take approximately 15 minutes and closes on February 28th.

If your child is 1 to 5 years of age click click here.

If your child is 6 to 15 years of age click here.
HH Sleep Research Survey for parents/caregivers of children 1 - 15 years old
 
Goal of the survey:

“In an EEG study, our study group could show that sleep in patients with HH can be severely disrupted (based on unpublished data) but very little is known about perceived sleep quality and sleep habits in these children. The present study aims to assess sleep habits, quality, daytime sleepiness, and quality of life of children with epilepsy in the form of a survey of parents. After collecting answers from various epilepsy types, children with HH will be analyzed as an individual subgroup. We hope to raise awareness for sleep disturbances with this survey. In the future, results of this study might help to include patient-reported outcome measures into clinical studies.”
 
Privacy Guarantee:

Data storage and evaluation is only done in a pseudonymous matter. IP addresses will not be collected and data are not linked to individuals. After completing all analysis, results will be made available for Hope for Hypothalamic Hamartomas to share with the HH Community.

If your child is 1 to 5 years of age click click here.
If your child is 6 to 15 years of age click here.
We want to encourage more researchers to include patient-provided information in
their publications – but they can’t do this without the patients and families' input!
Please take a few minutes and help us drive research in the direction it needs
to go – information with representation!
Sleep Study Principal Researchers
Dr. Alexandra Klotz
Dr. Alexandra Klotz is head of the pediatric epileptology section of the Department of Neuropediatrics and Muscle Disorders at the University Hospital Freiburg, Germany. Her main research interests include the treatment of epilepsy and comorbidities in patients with hypothalamic hamartoma and other epilepsies.
Dr. Julia Jacobs-Levan
Dr. Julia Jacobs-Levan is the current Director of the Pediatric Epilepsy Program at Alberta Children's Hospital. She is an Associate Professor affiliated with the Department of Pediatrics and Clinical Neuroscience at the University of Calgary and an Adjunct Professor at the University of Freiburg, Germany.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org