Strengths and weaknesses of a non-profit, hospital-based registry for spinal cord injury
Spinal cord injury (SCI) is a leading cause of death and disability worldwide. People who sustain SCI are known to experience partial or total paralysis, chronic pain, and significant disruptions to their quality of life—and although therapeutic interventions can reduce the burdens associated with SCI, these injuries are irreversible. Efforts to prevent and treat these injuries are most effective when they are informed by data about risk, causes of injury, symptoms, and long-term outcomes. As a result, clinicians and researchers are highly motivated to gather information about the individuals who have sustained SCI. National SCI registries enable clinicians to effectively collect, analyze, and distribute these data for future use.
The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a non-profit, hospital-based initiative to evaluate the quality of care, long-term outcomes, and personal burdens associated with SCI in Iran. Eight trauma centers in Iran have implemented the NSCIR-IR, and the registry currently provides data to several ongoing research projects. Because use of the NSCIR-IR is on the rise in Iran, researchers want to ensure that the registry is collecting and providing high-quality, consistent, confidential information about SCI patients. A research team recently evaluated the NSCIR-IR across several domains of success, finding that the registry has several areas of strengths and weaknesses.
Strengths of the NSCIR-IR include factors related to governance and ethicality. Funded and maintained by the Ministry of Health and Medical Education (MOHME), the registry is executed by a strong steering committee that secures ongoing resources, ensures sustainability, and directs registry activities. The NSCIR-IR also benefits from strong collaborations with international partners. Critically, these stakeholders are all committed to protecting patient privacy by collecting all data with attention to security, ethics, and confidentiality.
However, the registry faces some administrative challenges. For example, the NSCIR-IR continues to suffer from limited human and financial resources. Although the steering committee works to maximize resources by allocating them intelligently, the registry would benefit if supported and sponsored by the World Health Organization and insurance companies. Additionally, researchers note that the NSCIR-IR is not optimally structured to facilitate information exchange with other partners and agencies. Registry coordinators are taking first steps to address this challenge by sharing the NSCIR-IR database with other organizations, such as the National Trauma Registry of Iran.
National registry initiatives for SCI such as the NSCIR-IR represent a promising approach to addressing this serious public health concern. When existing administrative concerns are handled with care and attention, national SCI registries can improve clinicians’ capacity to provide innovative, effective treatments that significantly improve their patients’ quality of life after SCI.
Sharif-Alhoseini M, Azadmanjir Z, Sadeghi-Naini M, et al. National Spinal Cord Injury Registry of Iran (NSCIR-IR): A critical appraisal of strengths and weaknesses. Chinese Journal of Traumatology. (July 2019).