Establishing a cerebral palsy registry in Kuwait: An exploratory study

Area of Science:

• Pediatric neurology
• Public health surveillance
• Disability research

Background:

• Cerebral palsy (CP) is the leading childhood motor disability, characterized by permanent, non-progressive brain development disorders affecting posture and movement.
• CP registries enhance research productivity and provide crucial baseline data for understanding the condition within specific populations.
• In Kuwait, a CP registry is needed to gather essential demographic and medical information on affected children and their families.

Purpose of the Study:

• To explore the feasibility of establishing a pediatric cerebral palsy (CP) registry in Kuwait.
• To collect demographic and medical data on children with CP and their caregivers.
• To assess caregiver willingness for follow-up and participation in future research.

Main Methods:

• An exploratory study involving caregivers of children diagnosed with CP (aged 6 months to 18 years) recruited from Kuwaiti rehabilitation clinics.
• Data collection focused on registry and feasibility variables, including child demographics, medical history, and caregiver willingness to participate.
• Inclusion criteria required caregivers to have permanent residency in Kuwait and fluency in Arabic and/or English.

Main Results:

• Fifty-three caregivers participated, representing children with a mean age of 5 years and 5 months; 55.77% had Gross Motor Function Classification System (GMFCS) level V.
• Less than half (47.32%) of the 112 screened caregivers participated, with most (90.56%) using the Arabic data collection form.
• A significant majority of caregivers expressed willingness to be contacted for follow-up and future research.

Conclusions:

• The findings indicate that establishing a pediatric cerebral palsy registry in Kuwait is feasible.
• Caregiver participation and willingness to engage in research are positive indicators for registry development.
• Further development of a CP registry in Kuwait can provide valuable data for improving care and research.