UK research priority setting for childhood neurological conditions

Area of Science:

• Pediatric Neurology
• Clinical Research
• Patient-Centered Outcomes

Background:

• Childhood neurological conditions (CNCs) encompass a wide range of common and rare disorders affecting children and young people.
• Identifying research priorities is crucial for advancing effective interventions and improving patient outcomes.
• Patient and caregiver involvement is essential in setting research agendas.

Purpose of the Study:

• To establish research priorities for the effectiveness of interventions in children and young people (CYP) with childhood neurological conditions (CNCs).
• To address key uncertainties identified by patients, caregivers, and clinicians.
• To guide future research funding and clinical trial design.

Main Methods:

• Utilized the James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology, a collaboration between the National Institute for Health and Care Research (NIHR) and the British Paediatric Neurology Association.
• Conducted two surveys to gather and prioritize uncertainties from a broad stakeholder group, including CYP, parents, and caregivers.
• A consensus workshop involving diverse stakeholders finalized the top 10 research priorities.

Main Results:

• Over 1800 uncertainties were submitted by 701 participants in the initial survey.
• 1451 participants prioritized 44 uncertainties in the second survey.
• The final top 10 research priorities focus on interventions for CNCs and associated comorbidities like sleep, emotional well-being, and distressing symptoms.

Conclusions:

• The identified research priorities will direct future studies on intervention effectiveness for children and young people with neurological conditions.
• This patient-centered approach ensures research addresses the most pressing needs of those affected by CNCs.
• The findings will inform the development of more targeted and effective treatments.