New Zealand Spinal Cord Injury Registry (NZSCIR)
What is the NZ Spinal Cord Injury Registry?
The registry aims to record every new spinal cord injury (SCI) in NZ each year. Basic statistics are collected to help SCI services track how many people sustain a SCI, what the causes are (both as a result of an accident or illness), the severity and what treatments achieve better outcomes.
All information collected is confidential, heavily protected and grouped together with information from other people (by type of SCI, gender, or age group) to protect the identity of registry participants in reports. NZSCIR has strict guidelines and procedures in place regarding privacy and data storage which are approved by the NZ Health and Disability Ethics Committee (HDEC).
By collecting a person’s demographic information (age, gender, ethnicity etc.) and clinical data (level and type of injury, admission and discharge dates, complications, etc.), it allows clinicians, researchers and healthcare providers to see trends and answer critical questions about how their patients are being treated. This information is used to improve SCI care within spinal services. The registry also helps to develop evidence-based practices.
As SCI is an uncommon, high-cost medical condition which varies a lot from person to person, registries are one of the only ways to study variations, complications and outcomes. Without this research, there is no way to know how to improve care or bring new therapies into practice.
Who is enrolled?
The two specialist NZ spinal-services which collect information for the registry are located in Auckland (Middlemore Hospital and Auckland Spinal Rehabilitation Unit, Te Whatu Ora Counties Manukau Health) and Christchurch (Christchurch Hospital and Burwood Spinal Unit, Te Whatu Ora Waitaha Canterbury). Any person with a new SCI (both as a result of an accident or illness) admitted to either spinal service from 1st Aug 2016, has information entered into the registry.
What information is collected?
The following basic information (known as a minimal dataset) is collected:
- demographics – such as age, gender, and ethnicity
- where treatment was received
- basic information about the SCI
A Registry Coordinator visits participants to gain consent for a full data set. If consent is given, extra information is added to the basic information such as education level, occupation, height and weight. We also collect details about participants’ SCI, treatment, complications and rehabilitation. We gather this information from medical records, clinicians (nurses, doctors, surgeons, physiotherapists, occupational therapists) and questionnaires with the participant prior to discharge. It is then entered into the national registry. Non-NZ residents will only have a minimal set of information collected.
The NZSCIR aims to follow consenting participants into their community at 18 months, 5 years, and 10+ years following the initial presentation, using online or postal questionnaires. This information is vital in seeing how SCI affects those in the community and what ongoing services are needed for community participation.
Are you on the registry?
If you had an SCI before August 2016, we would like to add your details to the registry – please click here.
What will the information be used for?
Information is used to improve our understanding of SCI in NZ. It will help improve how we support people with a SCI and related medical complications. Information may also help us learn how to prevent SCIs.
We will use the information for:
- supporting, managing, and improving the quality of patient care
- evaluating data quality and assessment tools
- assisting in planning and future development of spinal services
Are individual patients identified in reports?
It is important to stress that the data released from the registry does not identify specific individuals. All personal and identifying information is removed from the data set before it is published. Researchers must have ethical approval to use the data. Your information is confidential and subject to strict privacy laws, bound by the Health Information Privacy Code, 2020.
Who has access to the data?
Only a limited number of NZSCIR personnel have access to individual SCI data. Access is restricted to those personnel who need to input the data and check the data for accuracy.
NZSCIR may also share a sample of identifiable data with researchers that have a scientifically and ethically approved research proposal. NZSCIR requires these researchers to undergo a rigorous data access request and review process before they can access any data. This process is outlined in the registry’s Data Access Policy (available upon request). This policy ensures that any access to SCI data by researchers follows the NZSCIR’s “gold standard” for privacy and security protection. All reports and publications will not contain personal or identifying information.
We share limited identifiable demographic information with St John Ambulance (linked using personal information already collected such as date of birth) to improve quality of care. Strict confidentially measures are in place to maintain your privacy.
Thank you to the dedicated clinicians, coordinators and researchers who collect, input and analyse NZSCIR data. The NZ Spinal Trust helps the NZSCIR share information about the registry with the NZ spinal community on its website. We are grateful for this important and generous gesture. Also, special thanks to all those participants with SCI who have generously given their time and experiences to the NZSCIR.
Without the contributions of all of these people, the NZSCIR would not be able to help improve the care provided to those with SCI, in NZ and internationally. The goal is to maximise the potential of those with SCI and for everyone to reach his or her fullest recovery possible.
If you have any questions, please feel free to contact the Registry Coordinator in your area.
Burwood NZSCI Registry Coordinator
Phone: 03 383 7559 or Ext: 99559
Mobile: 021 594 291
Auckland NZSCI Registry Coordinator
Phone: 09 270 9000
Mobile: 021 1920 377