Epigenetic Age as a Biomarker of Health Fragility in Children with SNI-SE

A video message from the study team.
What Participation Involves
Eligibility and Consent
Confirm eligibility online and sign a digital consent form.
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Intake Questionnaire
Complete a short survey about your child’s health history.
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At Home DNA Mouth Swab
Use our simple mailed kit to collect and return a sample.
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Feedback Questionnaire
Share your experience to help us improve future studies.
Quick Facts
Study design:
Short online questionnaire and at-home cheek swab (non-invasive, mailed kit).
Goal:
To understand whether DNA-based markers of biological aging may help us better understand health changes in children with complex neurological conditions.
Location:
In your home. All supplies are mailed directly to you.
Time commitment:
About 60–90 minutes across all activities.
Honorarium:Â
All families will receive a $100 honorarium for their participation.Â
Why This Study Matters
Children with Severe Neurological Impairment with Static Encephalopathy (SNI-SE) experience challenges with movement, communication, and overall health. Some children remain relatively stable, while others face frequent health complications.
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We want to understand why this difference exists. One possibility is that illness and stress may cause the body to “age” faster on a biological level, affecting overall health. We will use cheek swab samples to measure “epigenetic age”, which can show the research team how quickly the body appears to age based on chemical changes to DNA.
Primary Purpose:
To assess whether it is feasible and acceptable for families to participate in a research study from home, including completing questionnaires and collecting cheek swab samples for DNA analysis.
Secondary Purpose:
To explore whether epigenetic age, a DNA-based measure of biological aging, can be measured using these samples and may be related to health in children with SNI-SE.
The findings from this study will help inform the design of future, larger studies aimed at better understanding health outcomes and supporting children with SNI-SE and their families.
​You may be able to participate in this study if:
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You are a parent or caregiver of a child with SNI-SE and at least one unaffected sibling between the ages of 3 and 10 years.
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Your family resides in Canada.
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You speak English.
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If more than one sibling is eligible, you may choose to enrol more than one child, but this is optional.
