Purpose

The Sri Lankan Cerebral Palsy Register (SLCPR) is a confidential database that collects detailed clinical and demographic information about individuals with cerebral palsy (CP). This information is de-identified to ensure privacy and is used to better understand the condition and its impact in Sri Lanka.

Information Collected

The Sri Lanka Cerebral Palsy Registry (SLCPR) collects information through questionnaire-based interviews with parents of children diagnosed with cerebral palsy. The data gathered covers a wide range of areas, including:

• Personal Information: Name, residential address, contact details, date of birth, and gestational age
• Birth and Medical History: Key birth details, potential causes, risk factors, and family health information.
• Clinical Assessments: Findings from general movement assessments, diagnostic details, type and severity of cerebral palsy, and associated conditions or impairments.
• Additional Records: Immunization records, nutritional information, and results of genetic testing (if available)
• Education: Information about schooling, type of school attending, and any challenges faced during schooling
  Support and Services: Details about the services utilized and professionals involved in the child’s care.

Procedure

Participants for this study are identified by healthcare professionals working at our study sites.

Once a potential participant is identified, their family will receive a CP Register Information Sheet (linking to the document which is available to download in Forms & Leaflets Section) which provides clear details about the study. Families will have the opportunity to ask any questions before deciding whether to participate. If they agree, the parent or guardian will provide written consent using the official consent form (linking to the document which is available to download in Forms & Leaflets Section). Whenever possible, we will also seek the child’s consent to participate, although this is not mandatory for inclusion.

Data for the study will be gathered through:

• Interviews with the family
• Input from the healthcare professional overseeing the child’s care
• Review of relevant health records

All the data essential to the research will be carefully collected by using  the CP Register Record Form .

Ethics and Confidentiality

The SLCPR has received approval from the Ethics Review Committee of the Faculty of Medicine, University of Kelaniya, Sri Lanka (ERC Number: P/105/3/2017). Additionally, permission to collect data within the selected hospitals has been granted by the respective hospital authorities.

Participation in the SLCPR is completely voluntary, and families have the right to withdraw their information at any time. All data collected is treated with strict confidentiality. To learn more about the purpose, objectives, and procedures of the research, along with any potential risks or benefits, you can refer to our Information Sheet.

Use of Information

The information is used to conduct research, produce reports with research findings, and publications in scientific journals, deliver presentations to raise awareness, and enhance the overall understanding of cerebral palsy.