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

Sami Mukhdari Mushta; Riyad Alghamdi; Hani Almalki; Saadia Waqas; Adel Alawwadh; Osamah Barasheed; Mohammad Garnan; Sarah McIntyre; Harunor Rashid; Nadia Badawi; Gulam Khandaker

doi:10.1007/s44197-024-00198-5

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

J Epidemiol Glob Health. 2024 Feb 15. doi: 10.1007/s44197-024-00198-5. Online ahead of print.

Authors

Sami Mukhdari Mushta^{1

2}, Riyad Alghamdi³, Hani Almalki⁴, Saadia Waqas⁵, Adel Alawwadh⁶, Osamah Barasheed⁷, Mohammad Garnan⁸, Sarah McIntyre⁹, Harunor Rashid^{10

11}, Nadia Badawi^{9

12}, Gulam Khandaker^{13

14}

Affiliations

¹ Public Health Authority (PHA), 13351, Riyadh, Saudi Arabia. smmushta@pha.gov.sa.
² The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Westmead, NSW, 2145, Australia. smmushta@pha.gov.sa.
³ Public Health Authority (PHA), 13351, Riyadh, Saudi Arabia.
⁴ Public Health Agency, Ministry of Health, 12382, Riyadh, Saudi Arabia.
⁵ King Fahad Center, Children with Disability Association (CDA), 12273, Riyadh, Saudi Arabia.
⁶ Khamis Mushayt Maternity and Children Hospital (KMMCH), 62454, Khamis Mushayt, Saudi Arabia.
⁷ The Executive Administration of Research and Innovation, King Abdullah Medical City in Holy Capital (KAMC-HC), 24246, Makkah, Saudi Arabia.
⁸ Public Health Administration, Asir Health, 62523, Abha, Saudi Arabia.
⁹ Cerebral Palsy Alliance Research Institute, Specialty of Child and Adolescent Health, Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, Camperdown, NSW, 2050, Australia.
¹⁰ The Children's Hospital at Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Westmead, NSW, 2145, Australia.
¹¹ Sydney Institute for Infectious Diseases, Faculty of Medicine and Health, The University of Sydney, Westmead, NSW, 2145, Australia.
¹² Grace Centre for Newborn Intensive Care, Sydney Children's Hospital Network (SCHN), Westmead, NSW, 2145, Australia.
¹³ Central Queensland Public Health Unit, Central Queensland Hospital and Health Service, Rockhampton, QLD, 4700, Australia.
¹⁴ School of Health, Medical and Applied Sciences, Central Queensland University, Rockhampton, QLD, 4701, Australia.

PMID: 38358616
DOI: 10.1007/s44197-024-00198-5

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.

Keywords: Cerebral palsy; Epidemiology; Pediatrics; Prevention; Register; Saudi Arabia; Surveillance.