Recruitment: At-home cheek swab study for children with Severe Neurological Impairment and their siblings

Recruitment: At-home cheek swab study for children with Severe Neurological Impairment and their siblings

When: This study is ongoing and participation can be completed at a time that works for families
Where: At home
Who: Families with a child aged 3–10 with Severe Neurological Impairment caused by a static encephalopathy and a full biological sibling aged 3–10

Researchers at BC Children’s Hospital Research Institute are conducting a study involving children with Severe Neurological Impairment (SNI) and their siblings. The study is exploring whether families can successfully collect cheek swab samples from their children at home. These samples will help researchers study biological markers related to health and development.

Severe Neurological Impairment (SNI) describes a group of childhood conditions that significantly affect how the brain and nervous system develop or function. Children with SNI may need help with everyday activities such as moving, communicating, eating, or personal care and often have complex medical needs.

We are looking for:

  • Families with a child 3–10 years old with SNI caused by a static encephalopathy
  • A full biological sibling of the child with SNI who is also 3–10 years old

A static encephalopathy is a permanent brain injury or condition that occurred early in life and does not progressively worsen. Examples include cerebral palsy resulting from an early brain injury, brain injury related to lack of oxygen around the time of birth, and certain congenital brain abnormalities. Children with progressive neurological disorders are not eligible for this study.

What does participation involve?

  • Participation takes place entirely from home
  • Families will be asked to complete a short caregiver questionnaire and collect a painless cheek swab from their child with SNI and their sibling using a kit mailed to their home
  • Samples are then returned to the research team using a prepaid shipping package
Families will receive a $100 honorarium to thank them for their time.

To express interest in the At-home cheek swab study for children with Severe Neurological Impairment and their siblings, please fill out the form below.

How can you help?

There are so many ways to give. You can support complex care for children with life-threatening illnesses and families in BC and the Yukon. With your help, Canuck Place will support them in living the end of life as fully as the beginning.

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