The NZSCIR is a long held dream since it was first mooted in 1968 – by the founder of the Burwood Spinal Unit, Mr. Bill Utley. As part of the NZ SCI Action Plan 2014-2019, a pilot study was conducted at the Burwood Spinal Unit with the Burwood Academy of Independent Living (BAIL), to determine the best registry for NZ. Canada’s Praxis Spinal Cord Institute registry (Formerly Rick Hansen Spinal Cord Injury Registry – RHSCIR) was identified as the best fit for NZ and the NZSCIR was launched on 1st August 2016. We became the first international site of the RHSCIR and continue to collaborate with the Praxis Spinal Cord Institute (PSCI). We are extremely grateful for their generous work and support in establishing and maintaining the NZSCIR. There would be no NZSCIR without the partnership of the Praxis Spinal Cord Institute.
The Governance Group consists of clinicians, funders, service management, researchers, and consumers. Current group members include:
Governance Group Chair: Chris Howard-Brown.
Mr. Raj Singhal. Clinical Director, Burwood Spinal Unit
Dr. Sureshbabu Sabramanian. Consultant, Auckland Spinal Rehabilitation Unit
Dr. Jennifer Dunn. Researcher, University of Otago; Physiotherapist.
Michelle McCallum-Jones. Service Manager, CMH
Heidi van Wyk, ACC
Mr. Alpesh Patel, Orthopaedic Surgeon, CMH
Mr. Rowan Schouten, Orthopaedic Surgeon, CDHB
Dr. Richard Smaill, Researcher, Consumer
Liz Oliver, Service Manager, Burwood Spinal Service
Suzanne Humphreys, Praxis Spinal Cord Institute, Canada
Leah Young, Service Manager, Auckland Spinal Rehabilitation Unit
How many people sustain an SCI each year? What was the cause of their SCI and how severe was it? What treatments result in better outcomes?
Ideally, every researcher, clinician, and healthcare administrator would have access to this type of information. Questions like these are the reason that the NZ Spinal Cord Injury Registry (NZSCIR) was established.
By collecting a person’s demographic information (age, date of injury, gender, location, etc.) and clinical data (level and type of injury, admission and discharge dates, complications, etc.), it enables researchers and healthcare providers to answer critical questions about care, including evaluating how their patients are being treated and help identify how to improve SCI care at their facility. The registry helps facilitate the translation of research into clinical practice and promotes evidence-based practices.
As SCI varies so much from person to person, registries are one of the only ways to study the many variations, complications, and outcomes of such an infrequent, high-cost medical condition. Without such research, there is no way to know how to improve care or bring new therapies into practice.
Who is enrolled?
Auckland and Christchurch operate the two NZ spinal services which collect information for the registry. Any person with a new SCI admitted to either spinal service from 1st Aug 2016, is approached for consent. Those with traumatic and non-traumatic SCI are approached by registry staff. Non-NZ residents will have a minimal set of information collected. We aim to follow those with an SCI throughout their lives.
Are you on the registry?
If you had an SCI before August 2016, we would like to add you to the registry – please click here.
What information is collected?
The following information is collected:
- demographics – such as age, gender, and ethnicity.
- where treatment was received.
- information about the SCI.
If consent is given, a Registry Coordinator visits participants, and additional information is collected (like education level, occupation, height, and weight). We also collect details about participants’ SCI, treatment, complications, rehabilitation, and medical conditions. We gather this information from medical records, clinicians, and questionnaires with the participant prior to discharge. It is then entered into the national registry.
The NZSCIR will follow participants into their community at 18 months, 5 years, and 10+ years following the initial presentation. This information is vital in seeing how SCI affects those in the community & what services are needed to ensure ongoing community participation.
What will the information be used for?
The information will be used to improve our understanding of SCI in NZ. It will help improve how we support people with an SCI, and how we prevent SCI and related medical complications.
We will use the information for:
- supporting, managing, and improving the quality of patient care
- evaluating data quality and assessment tools
- assist planning and future development
Are individual patients identified in reports?
It is important to stress the data provided for reports and research does not identify specific individuals. The data is stripped of all personal and identifying information, before being provided to researchers who access the data. Your information is confidential and subject to strict privacy laws, bound by the Health Information Privacy Code, 1994. It is combined with information from other people, for example by your type of SCI, your gender, or age group.
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 de-identified data with researchers that have a scientifically and ethically approved research proposal in place to further SCI translational research. NZSCIR requires these researchers to undergo a rigorous research access request and review process before they can receive access to data. This process is outlined in the Registry’s Data Use and Disclosure 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.
Thank you to the dedicated clinicians, researchers, and coordinators who collect, analyse and input data into the NZSCIR. The NZ Spinal Trust has played a significant part in designing and providing a platform for the NZSCIR to be accessible to the spinal community of NZ via their 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 1456 300
Auckland NZSCI Registry Coordinator
Phone: 09 270 9000
Mobile: 021 1920 377