Overview
The NORA Registry is an umbrella programme for structured, longitudinal data collection across selected neurosurgical conditions in which single-centre series are often underpowered or difficult to generalise. The aim is to harmonise clinically relevant variables, definitions and follow-up so that participating centres can study presentation, treatment, complications and outcomes with greater precision.
Objectives
Current disease-specific registries
The initial NORA Registry portfolio includes four complementary multicentre cohorts:
Intramedullary lesions
Rare intramedullary spinal cord lesions are difficult to study with single-centre cohorts. We are building a multicentre dataset to characterise presentation, imaging and pathological features when available, treatment strategies, perioperative complications, neurological recovery and longer-term outcomes. The goal is to identify reproducible prognostic factors and generate better evidence for counselling and treatment planning.
Spinal cord injury registry
This registry focuses on traumatic spinal cord injury across the acute and recovery pathway. Core variables include injury characteristics, neurological status, timing and type of surgery, critical-care course, complications, rehabilitation and longitudinal functional recovery. Multicentre data will allow comparison of care pathways and the study of factors associated with neurological and functional outcomes.
Traumatic brain injury registry
The TBI registry is designed to capture clinically meaningful heterogeneity in traumatic brain injury, from initial physiology and imaging to neurosurgical interventions, monitoring, complications, mortality and functional recovery. The programme aims to describe outcome trajectories and provide a platform for future prognostic and comparative-effectiveness studies.
DISH / Ankylosing spondylitis registry
Patients with an ankylosed spine due to ankylosing spondylitis or diffuse idiopathic skeletal hyperostosis (DISH) can sustain highly unstable spinal injuries and face substantial perioperative risk. This registry studies fracture patterns, neurological presentation, surgical strategy, fixation approach, complications, mortality and functional outcomes to improve the evidence base for these complex cases.
Collaboration
Project-specific collaboration depends on protocol maturity, governance, ethical approvals and data-sharing arrangements. Centres or investigators interested in aligned research questions are welcome to contact the NORA team.