Department of Rehabilitation Medicine, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
Steering group of the Netherlands CP register, Amsterdam, Netherlands.
BMJ Open. 2023 Oct 28;13(10):e076619. doi: 10.1136/bmjopen-2023-076619.
Cerebral palsy (CP) is a childhood onset, lifelong, condition. Early detection and timely treatment of potential problems during the child's development are important to prevent secondary impairments and improve function. Clinical management of children with CP requires a spectrum of multidisciplinary interventions, which have an impact on short-term and long-term outcomes. However, there is a lack of knowledge about a personalised approach in this heterogeneous population. Various CP registers with different aims have been developed worldwide, which has made an important contribution to our understanding of CP. The purpose of this protocol is to describe the unique design of a combined multidisciplinary surveillance and treatment register for children with CP in the Netherlands, which aims to improve quality of care and to enhance an individual treatment approach.
The Netherlands CP Register combines a multidisciplinary surveillance programme with a standardised protocol for treatment registry. The register systematically collects real-life surveillance and treatment data of children with CP. The register contributes to daily care at the individual level by screening for potential secondary impairments using a decision-support tool, by visualising individual development using a dashboard, and by supporting goal setting and shared decision-making for interventions. The register provides a platform at the national level for quality of care improvement and a comprehensive database of real-life data allowing multicentre studies with a long-term follow-up. People with lived experience of CP, healthcare professionals from different disciplines and researchers collaborated in the development of the register.
The Netherlands CP register was submitted to the Medical Ethics Review Committee of VU University Medical Center (Amsterdam, the Netherlands), who judged the register not to be subject to the Medical Research Involving Human Subjects Act. A scientific board reviews requests for dissemination of data from the register for specific research questions.
脑瘫（CP）是一种儿童期发病、终身性疾病。早期发现和及时治疗儿童发育过程中的潜在问题对于预防继发性损伤和改善功能非常重要。CP 患儿的临床管理需要一系列多学科干预措施，这些措施对短期和长期结局都有影响。然而，对于这个异质性人群，个性化方法的相关知识还比较缺乏。世界各地已经开发了各种具有不同目的的 CP 登记处，这对我们理解 CP 做出了重要贡献。本方案的目的是描述荷兰一种独特的 CP 儿童综合多学科监测和治疗登记处的设计，该登记处旨在改善护理质量并增强个体化治疗方法。
荷兰 CP 登记处将多学科监测计划与 CP 治疗登记处的标准化方案相结合。该登记处系统地收集 CP 儿童的真实生活监测和治疗数据。该登记处通过使用决策支持工具筛查潜在的继发性损伤，通过使用仪表板可视化个体发育，以及通过支持干预措施的目标设定和共同决策，为个体护理提供帮助。该登记处为改善护理质量提供了一个国家层面的平台，并为现实生活数据的多中心研究提供了一个全面的数据库，具有长期随访。CP 患者、来自不同学科的医疗保健专业人员和研究人员共同参与了该登记处的开发。
荷兰 CP 登记处已提交给阿姆斯特丹 VU 大学医学中心医学伦理审查委员会（荷兰），该委员会认为该登记处不受《涉及人体医学研究的医疗保健法》的约束。科学委员会审查从登记处请求传播数据以回答特定研究问题的请求。
