Establishing cerebral palsy register in low- and middle-income countries: a step-by-step guide

WHO SHOULD JOIN?

Clinicians, researchers, students, allied health professionals working with children with cerebral palsy, people with lived experience and caregivers of children with cerebral palsy.

BACKGROUND

This interactive webinar will provide an overview of setting-up a cerebral palsy register/ database of children with cerebral palsy in low- and middle-income countries (LMICs). The facilitators will demonstrate the different steps using examples from cerebral palsy registers established as part of the global LMIC cerebral palsy register (GLM CPR).

OBJECTIVE

The overall objective of this webinar is to encourage and empower professionals working with children with cerebral palsy in LMICs to setup a register/database, advance scope for research and evidence-based services and improve health and well-being of children with cerebral palsy in LMICs.

WEBINAR CONTENTS AND STRUCTURE

1. Key components of setting-up a cerebral palsy register/database –

• implementing partners and available resources,
• meaningful and achievable objective,
• study site and settings,
• validated methodologies tailored to the local context,
• proposal, data collection tools and other resources
• ethical considerations such as human research ethics committee, informed consent,
• implementation and data collection,
• dissemination of the findings to diverse stakeholders (e.g., policymakers, healthcare professionals, community).

2. Cultural sensitivity, consumer engagement and community mobilization – scopes and strategies.

3. Quality assurance in assessment and data collection – resources, training, and monitoring.

4. Budgeting/funding sources – practical guidance on budget development, cost-effective strategies to address the financial constraints often encountered in LMICs and potential funding sources.

5. Collaborations and networking – service provision for the registered children and expansion of the network.

6. Knowledge translation and capacity building – publications, communicate findings with national and international stakeholders, integration of training, mentorship/supervision to mid-level professionals, emerging and early career researchers (masters, PhDs, Postdocs) within for their professional development and sustainability of the register activities.

7. Scope for joining the GLM CPR network and collaborating on multi-country cerebral palsy research in LMICs.

LEARNING OUTCOME

This webinar will enable participants with practical skills, insights, and inspiration for planning, implementation and embarking on an impactful research journey that could contribute meaningfully to the well-being of children with cerebral palsy in resource-limited settings.

The interaction session will include several worksheets on set topics such as writing objectives, identifying available resources to start with, budget items and knowledge translation strategies.

FACILITATOR(S)

1.  Professor Gulam Khandaker

PRE-WEBINAR READING MATERIALS

The interested participants are encouraged to read the following published protocols (open access) prior joining the webinar.

1. Bangladesh Cerebral Palsy Register (BCPR).

2. Hospital-based surveillance of cerebral palsy in Vietnam.

3. Latin American Network of Cerebral Palsy Register (LATAM-CPR).