KCNQ2 Sleep Study
KCNQ2 Cure has partnered with international pediatric neurologist Ingrid Scheffer, who was instrumental in the identification of KCNQ2 developmental and epileptic encephalopathy.
Dr. Ingrid Scheffer is conducting a sleep study specific to KCNQ2. Anyone who has a child affected by a change in the KCNQ2 gene is able to participate. Having seizures or a history of seizures is not a requirement to participate in this study. If you are interested in participating, there are several steps you must follow. It takes less than 10 minutes to complete the survey itself. If you have any questions, please contact Scotty Sims at scotty@kcnq2cure.org.
Don’t have a printer/scanner. You can download Adobe Acrobat DC Reader for free. This will allow you to review, complete, and sign documents on your computer.
- Read the introduction letter from Dr. Scheffer
- Review:
- PICF Parent Guardian information sheet if your child is UNDER 18 years of age OR
- PICF Person Responsible information sheet if your child is OVER 18 years of age.
- Review and sign:
- PICF Parent Guardian consent if your child is UNDER 18 years of age OR
- PICF Person Responsible consent if your child is OVER 18 years of age.
- Complete Medical Record Consent – in the FROM section of the consent, please list all main doctors and hospitals involved where EEG and MRI and genetic testing are done.
- Complete Contact details – under FAMILY NAME please list the full name of the child and guardian(s).
- Complete Sleep Disturbances Scale for Children
Please email completed forms to Dr. Scheffer’s research team at epilepsy-austin@unimelb.edu.au by December 31, 2023.
**The email should be titled “KCNQ2 sleep study” and have four (4) attached documents: consent, medical record consent, contact details, and the sleep scale.