Clinical registries

A clinical registry is a structured data collection system that gathers information in a standardized manner regarding a patient population defined by a specific disease, condition, or exposure. Also referred to as medical registries, patient registries, or cohorts, these tools make it possible to track and analyze specific clinical outcomes.

Today, clinical registries serve as an essential driver for the continuous improvement of healthcare. They contribute to a better understanding of diseases, the evaluation of medical practices, and the evolution of care pathways.

As valuable resources for research, they provide high-quality data derived from real-world clinical practice. Analyzing this data helps, among other things, to identify rare adverse effects, detect unusual complications, and generate knowledge that contributes to the ongoing improvement of care.

Developing clinical registries means investing in reliable data that supports research, innovation, and the quality of care.

In Switzerland, one of the best-known clinical registries is the one for HIV, initiated in the 1980s, which has been highly significant for the diagnosis of the disease and the improvement of treatments. Historically, the first clinical registry was established in Norway in 1856 and concerned leprosy.

Accompagnement du NeuroCentre des HUG

The HUG NeuroCentre team supports HUG professionals in the implementation of clinical registries through several key stages:

Assistance with drafting the documents required to establish a clinical registry or to participate in an existing one, in compliance with current regulations.
Screening: a thorough review of each eligible case to identify those that meet the criteria for participation in the registry.
Patient consent: ensuring that each individual fully understands the objectives of the registry and provides informed consent before their data is included.
Data recording: the rigorous collection and entry of all relevant information.

Data is collected in accordance with the strictest ethical and legal standards, ensuring the confidentiality and security of patient information.

SIRIS Spine Registry

The SIRIS Spine registry was established in 2021. All acute-care hospitals that perform spinal surgery are required to register the following interventions: the most common spinal surgeries (lumbar spondylodesis/vertebral fusion), as well as vertebroplasty and kyphoplasty (minimally invasive procedures for vertebral fractures).

The team at the HUG NeuroCentre manages several crucial stages of this process:

Screening: A meticulous review of each eligible case to identify those that meet the criteria for inclusion in the registry.
Patient consent: Ensuring that every individual fully understands the objectives of the registry and provides informed consent before their data is entered into the SIRIS Spine registry.
Data entry and verification: The rigorous collection and recording of all relevant information.

In 2025, the SIRIS Foundation conducted an audit to verify all processes and data. The results for the Department of Neurosurgery were exceptionally positive, with a data accuracy rate of 97%, data completeness of 99%, and a 100% entry rate.

Key findings from the audit included:

The completeness of the data recorded in patient files (e.g., follow-up photographs of surgical scars for neurosurgery patients).
The commitment of the staff responsible for entering data into the SIRIS Spine registry (at the NeuroCentre), which ensures the completeness and accuracy of the information provided.
The willingness of the NeuroCentre team to collaborate with the SIRIS Spine team.

This achievement is the result of a successful collaboration between the medical and nursing teams and the NeuroCentre.

Data is collected in compliance with the strictest ethical and legal standards, ensuring the confidentiality and security of patient information.

For information regarding the SIRIS Spine registry, you may:

Visit the ANQ website,
Visit the SIRIS website,
Access the SIRIS Spine registry
Reach out to Laura Papes, research nurse at the HUG NeuroCentre.

Registers

Accompagnement du NeuroCentre des HUG

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