NetQure

Background of the study

Many acute and post-acute interventions for traumatic brain injury (TBI) are not evidence-based. Clinical practice is often too complex to be studied in clinical trials. Strict in- and exclusion criteria and selected treatment settings result in limited external validity. Large between-institution variation in process and structure of treatment may remain unnoticed leading to suboptimal patient outcomes. Comparative effectiveness research (CER) is a promising alternative to investigate the effectiveness of treatments in clinical practice. CER depends on high quality observational data, which are currently lacking in the Netherlands. Therefore development of a quality registry is a prerequisite to open the black box of the acute and post-acute treatment variety for TBI.

Net-QuRe study design

The Neuro-traumatology Quality Registry (Net-QuRe) is a prospective observational multicenter cohort study with a 2-year follow-up period on care pathways and outcomes for patients with moderate to severe TBI. Neurosurgical centres and rehabilitation centres of Rotterdam, The Hague, Leiden, Tilburg, Groningen and Nijmegen collaborate in this study.

Patients with moderate to severe TBI are included in level-I trauma centres and followed through the continuous care chain. Outcomes of interest include clinical characteristics, treatments, complications, independence level, mood, neuropsychological functioning, and health-related quality of life, up to 2 years after TBI, collected by trained research nurses. Protocolled assessments based on the ICF domains take place in the acute phase, and 6, 12, and 24 months post-injury. To evaluate quality of care, structure and process indicators and costs are registered at the patient and institutional level. Surgical and rehabilitation strategies will be evaluated with a CER design. The ultimate goal of Net-QuRe is to optimize care strategies by identifying best practices for individual patients. This study is funded by the Dutch Brain Foundation.