Saudi Cerebral Palsy Register (SCPR): Protocol on the Methods and Technical Details

• Main Authors: Sami Mukhdari Mushta (Author), Riyad Alghamdi (Author), Hani Almalki (Author), Saadia Waqas (Author), Adel Alawwadh (Author), Osamah Barasheed (Author), Mohammad Garnan (Author), Sarah McIntyre (Author), Harunor Rashid (Author), Nadia Badawi (Author), Gulam Khandaker (Author)
• Format: Book
• Published: Springer, 2024-02-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.
• Notes: 10.1007/s44197-024-00198-5; 2210-6014
• Keywords: Cerebral palsy; Epidemiology; Pediatrics; Prevention; Register; Surveillance; Public aspects of medicine; RA1-1270
• Source: Journal of Epidemiology and Global Health, Vol 14, Iss 2, Pp 453-461 (2024)

Abstract This protocol presents a comprehensive proposal for the establishment of the Saudi Cerebral Palsy Register (SCPR), a crucial project for investigating and addressing the prevalence, etiology, and management of cerebral palsy (CP) in Saudi Arabia. The SCPR will not only provide a robust database for ongoing research and analysis but will also serve as a platform for investigating the causes of CP, implementing preventative strategies, and improving the quality of care and outcomes for people with CP and their families in Saudi Arabia. Detailed case definitions, inclusion/exclusion criteria, and data collection protocols are discussed to ensure the integrity and comparability of the data. The plan also outlines strategic funding, institutional and government endorsement, sustainability considerations, potential challenges and proposed solutions, and expected outcomes and impact. These include creating research and educational opportunities, fostering regional and international collaborations, and significantly contributing to CP prevention strategies. Overcoming anticipated obstacles, such as stigma, institutional policies, and collaborations, and securing both necessary funding and endorsements are highlighted as critical for the success of the SCPR. The project is not only aligned with promote prevention of health risks, a target of Vision 2030 in Saudi Arabia, but is also expected to have a substantial impact on the health and quality of life of people with CP and their families in Saudi Arabia, serving as inspiration for similar efforts worldwide.