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New Zealand Cerebral Palsy Register

The New Zealand Cerebral Palsy Register (NZCPR)

Te Rēhita a Hōkai Nukurangi Aotearoa

(National Ethic Approval: HDEC 13/NTA/130)

Background

Cerebral Palsy (CP) is the most common cause of childhood physical disability in high income countries, occurring as a result of a non-progressive disturbance that occurred in the developing foetal or infant brain. This injury results in a disorder in the development of movement and posture that causes activity limitation. The rates of CP have started to show a decline primarily in the prenatal/perinatal group due to increased awareness of CP and scientific advances that have improved clinical care. Population based CP Registers are the best mechanism to measure birth prevalence, accurately track trends and determine health service requirements for people living with CP.

The New Zealand Cerebral Palsy Register (NZCPR)/Te Rēhita a Hōkai Nukurangi Aotearoa was established in 2015 and aims to be the source of accurate, consistent, relevant, and high-quality health information to support positive health outcomes for all people in Aotearoa NZ with CP.

The purpose of the NZCPR is to:

  • To collect, analyse and report high-quality health data, for all people with CP

  • To describe, monitor and advocate across the life course, for all people with CP

  • To support high quality research that addresses the priorities of people with CP

  • To identify inequities and understand priorities for people with CP in Aotearoa NZ

  • To support Māori health equity for people with CP and their whānau

Benefits of having the NZCPR

  • Understand what living with CP means for different groups (such as Māori or people living in different parts of the country)

  • Guide health planning staff, to make sure all people with CP can access the right health services when they are needed

  • Promote research about CP so we can learn about what works in preventing and improving health for all people with CP in Aotearoa NZ

  • Share important information with people living with CP and their whānau

How to join the NZCPR

How can a parent or person with cerebral palsy participate in the NZCPR?

For Health Professionals

  • Complete an online notification card on behalf of a patient/parent/caregiver, click on the following link: online notification

  • Become a Health Professional member of the NZCPR , follow the link https://nz.cpregister.com/Member/Add to create a secure username and password. Once you have done this, you will need to login using your username (this will be your first initial and surname in lowercase).

For Researchers

The NZCPR research priorities for 2022 - 2023:

  • Equity and research that has a focus on improving Māori health gain

  • CP across the lifespan (e.g. transition to adult care, ageing)

Interested in using the register to support your research project? Please refer to the NZCPR guidelines https://nz.cpregister.com/Public/Research or contact the NZCPR team: nzcpr@adhb.govt.nz

Publications and research projects

  1. Williams SA, Alzaher W, Mackey A, Hogan A, Battin M, Sorhage A, Stott NS. “It Should Have Been Given Sooner, and We Should Not Have to Fight for It”: A Mixed-Methods Study of the Experience of Diagnosis and Early Management of Cerebral Palsy. Journal of Clinical Medicine. 2021; 10(7):1398. https://doi.org/10.3390/jcm10071398

  2. Williams, S.A., Mackey, A., Sorhage, A., Battin, M., Wilson, N., Spittle, A. and Stott, N.S. (2021). Clinical practice of health professionals working in early detection for infants with or at risk of cerebral palsy across New Zealand. J Paediatr Child Health, 57: 541-547. https://doi.org/10.1111/jpc.15263

  3. Whitta GT, Paine SJ, Mackey A , Sorhage A , Curtis E , Reid P, Stott NS. Investigating ethnic inequities in cerebral palsy – a pilot study (pending publication)

  4. Mackey A, Williams S, Sorhage A, Broadbent J, Battin, M, Stott, NZ. Community services accessed in first five years for children with cerebral palsy. Australian Academy of Cerebral Palsy and Developmental Medicine, 11–14 March 2020, Perth, Australia. Developmental Medicine & Child Neurology 62(S2), 30

  5. Williams S, Mackey A, Battin M, Wilson N, Sorhage A, Hogan A, Spittle, A, Stott N. A delayed diagnosis? Preliminary findings of clinician practice and family experience of diagnosis of cerebral palsy in New Zealand. Australian Academy of Cerebral Palsy and Developmental Medicine, 11–14 March 2020, Perth, Australia. Developmental Medicine & Child Neurology 62 (S2), 28.

  6. Williams S, Stott N, Wilson N, Sorhage A, Battin M, Hogan A, Mackey A. “It should have been given sooner, and we shouldn’t have to fight for it’: understanding the family experience of the diagnosis of cerebral palsy. American Academy of Cerebral Palsy & Developmental Medicine conference. Developmental Medicine & Child Neurology, Sept 2019, 61 (S3),162

  7. Williams S, Mackey A, Battin M, Wilson N, Sorhage A, Spittle A, Stott N. The awareness and use of diagnostic tools for early diagnosis of cerebral palsy in New Zealand. American Academy of Cerebral Palsy & Developmental Medicine conference. Developmental Medicine & Child Neurology, Sept 2019, 61 (S3) 113

  8. Mackey AH, Sorhage A, Wilson N, Stott NS. Ethnic diversity of the New Zealand Cerebral Palsy Register. Australasian Academy of Cerebral Palsy & Developmental Medicine conference. Developmental Medicine & Child Neurology, March 2018, 60 (S1) 1-79.

  9. Battin MR, Williams SA, Mackey A, Alzaher W, Sorhage A, Stott NS. Neonatal Neuroimaging in Neonatal Intensive Care Graduates Who Subsequently Develop Cerebral Palsy. Journal of Clinical Medicine. 2022; 11(7):1866. https://doi.org/10.3390/jcm11071866

  10. Mackey A; Williams S; Alzaher W; Sorhage A; Wilson N; Battin M; Stott S. An evaluation of equity in the cerebral palsy diagnostic process in the New Zealand setting between Māori and non- Māori children (2022) Dev Med Child Neurol, 64, S2 p 18 https://doi.org/10.1111/dmcn.15156

  11. Alzaher W; Mackey A; Battin M; Williams S; Sorhage A; Wilson N; Stott N. Use of cranial magnetic resonance imaging for children with cerebral palsy in New Zealand (2022) Dev Med Child Neurol, 64, S2 p 76 https://doi.org/10.1111/dmcn.15156

  12. Wright K; Dehar A; Stott S; Mackey A; Sorhage A; Tapera R; Williams S. Cerebral palsy registers and Indigenous health equity in ascertainment and data quality: An environmental scan (2022) Dev Med Child Neurol, 64, S2 p 19 https://doi.org/10.1111/dmcn.15156

  13. Sorhage A; Stott S. Hip surveillance in cerebral palsy: An evaluation of clinical practice in a children’s hospital in Aotearoa New Zealand (2022) Dev Med Child Neurol, 64, S2 p 38 https://doi.org/10.1111/dmcn.15156

  14. Sorhage A, Keenan S, Chong J, Mackey A, Hill T, Blackmore M, Byrnes C, Stott S. Identifying Inequities in Respiratory Health for New Zealand Children with Cerebral Palsy. AusACPDM 2022 Late and Breaking Abstract

  15. Wright, K., Tapera, R.M., Stott, N.S. et al. Indigenous health equity in health register ascertainment and data quality: a narrative review. Int J Equity Health 21, 34 (2022). https://doi.org/10.1186/s12939-022-01635-2

  16. He, W; Wilson, N; Sorhage A, Stott, S. Utility of data linkage for orthopaedic service planning in the paediatric population with cerebral palsy at Starship Hospital. The New Zealand Medical Journal (accepted for publication July 2022)

  17. The New Zealand Cerebral Palsy Register Report 2022, Te Whatu Ora, Te Toka Tumai, Auckland New Zealand (2022). https://nz.cpregister.com/Public/Publications or https://nz.cpregister.com/Public/nzl/20220908_NZCPR_Report.pdf

  18. The New Zealand Cerebral Palsy Register, Wellington Region Report 2021, Te Whatu Ora, Te Toka Tumai, Auckland, New Zealand (2021).

  19. Sorhage, A., Keenan, S., Chong, J., Byrnes, C., Blackmore, A. M., Mackey, A., Hill, T., Han, D. Y., & Stott, N. S. (2022). Respiratory Health Inequities among Children and Young Adults with Cerebral Palsy in Aotearoa New Zealand: A Data Linkage Study. Journal of clinical medicine, 11(23), 6968. https://doi.org/10.3390/jcm11236968

  20. Wright, K., Dehar, A., Stott, N.S. et al. Prioritizing indigenous health equity in health registers: an environmental scan of strategies for equitable ascertainment and quality data. Glob Health Res Policy 7, 24 (2022). https://doi.org/10.1186/s41256-022-00250-6

Recent Presentations: Please follow this YouTube link to view some of the presentations.

Te Reo term for Cerebral Palsy: Hōkai Nukurangi

Matua Keri Opai has led the development of Te Reo Hāpai, a Māori language glossary for use in mental health and disability (Te Reo Hapai). After an 18 month process, which also involved talking to whānau, people with lived experience of CP and clinicians, a new strength based Te Reo term for CP, Hōkai Nukurangi - to achieve what is important to you, was created. For more information about Keri’s process and the narrative behind Hōkai Nukurangi, click here or watch the video here.

  1. The NZCPR and the Cerebral Palsy Society of NZ are working closely together to develop a strategic alliance between the NZCPR and CPS with the objective of 1) improving health literacy through the interpretation and use of high-quality health information, improving decisions for health and well-being within the CP population and 2) agree to a joint interim steering committee to oversee key appointments and to initiate the alliance project

  2. We are affiliated with the Australian Cerebral Palsy Register. Follow the link to view the recent report that includes the NZCPR chapter https://cpregister.com/publications-and-other-resources/

  3. The NZCPR is committed to adopt and implement principles of whanaungatanga, manaakitanga and kaitiakitanga to guide our actions and activities. For more information on our standard operating procedures, governance polices and how we manage data storage and use please follow the link NZCPR/ Te Rēhita a Hōkai Nukurangi Aotearoa Standard Operating Procedures and Governance Policies and Guidelines

  4. The very first New Zealand Cerebral Palsy Register Report 2022 is now available to download here.