Participants Needed for the KCNQ2 Study – Your Involvement Matters

Dear Families,

Under the direction of Charissa Millevert, a comprehensive research project on KCNQ2-related developmental and epileptic encephalopathies is being conducted at the University of Antwerp. The team is currently looking for additional families to take part in the “KCNQ2 Modifier Study”.

If your child has a KCNQ2 diagnosis, your participation can make a meaningful difference – for science, for future care, and for the lives of other affected families.

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What is the study about?

Although many children share the same KCNQ2 mutation, their symptoms and development can vary widely – from mild to very severe. Why this is the case remains unclear.

This study aims to identify additional genetic or environmental factors – known as modifiers – that may influence how the condition develops. These could include medications or other inherited traits.

The goal is to:

  • Improve predictions about the course of the disorder,
  • Provide better guidance for parents, and
  • Explore new treatment strategies in the long term.

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What does participation involve?

  • Filling out a clinical questionnaire (available in English or German) with detailed information about your child’s development, epilepsy, treatments, and diagnostics.
  • Occasional updates on your child’s development over time – especially for younger children.
  • Optional: A DNA sample (EDTA blood sample). If DNA is already stored in a diagnostic lab, it may be used instead.

All data will be handled confidentially and used for research purposes only.

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Why your involvement matters

As KCNQ2 e.V., we fully support this study because we firmly believe that only with the active participation of affected families can real change be achieved.

Every child’s story brings us closer to understanding this condition. The more information we gather, the greater the chance to predict outcomes, develop better treatments, and create hope for all KCNQ2 families.

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Contact for participation

For questions or to express interest, please contact:

Charissa Millevert
Study Coordinator, University of Antwerp
KCNQ2@uantwerpen.be

Charissa will gladly assist you, including help with the questionnaire or accessing medical records.

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Thank you for your support!

Your team from KCNQ2 e.V.

Disclaimer: This post is for informational purposes only. It does not constitute medical advice. All decisions regarding diagnosis and treatment should always be made in consultation with qualified medical professionals.