My colleagues and I recently published a scoping review in Chiropractic & Manual Therapies. You can read the full text here:  

https://rdcu.be/enEbW

As a member of the multidisciplinary sports medicine community including the American Orthopaedic Society of Sports Medicine (AOSSM) and a regular participant of journal clubs through the University of Colorado School of Medicine's Orthopedic Sports Medicine Fellowship I have observed the power of clinical outcomes registries to serve as a powerful research engine. Within the orthopedic sports medicine community in the United States there are numerous registries which systematically track patient outcomes over time, allowing the comparison of different surgical techniques in meaningful ways. Ultimately registry-derived data can be used to guide clinical decision making and inform best practices, and guide the development of research questions for clinical trials and observational studies. 

As a clinical researcher and  chiropractor in active clinical practice, I wondered whether my own profession had begun to leverage the power of clinical outcomes registries. I approached the then President of the American Chiropractic Association, a fellow PhD who had graciously attended my Doctoral Thesis Defense virtually (in the midst of the Covid era) with this question, and a collaboration was born that soon grew to the research team on this paper. Our goal: to map the literature related to chiropractic clinical outcomes registries as a first step to understanding whether the chiropractic profession in the USA and globally had adopted registries as a framework for research, quality improvement, and/or policy guidance. 

This paper helpfully draws distinctions between registries, clinical/research databases, and practice-based research networks:

A clinical registry is an organized data collection system used by clinicians to systematically gather clinical outcomes as data points over time from patients who share a specific health condition, intervention, or other characteristics. These clinical data points are relevant to changes in the health condition under study that may be associated with the intervention. A registry’s primary purpose is to track trends in clinical outcomes, improve quality of care, benchmark healthcare performance, and support research and policymaking.

Chiropractic clinical outcomes are defined as patient-reported clinical measures during or after chiropractic care, including patient symptoms and function. These outcomes in a clinical registry are serially collected to gather data relevant to the condition or pathology under study.

For clarity, it is essential to distinguish clinical registries from clinical databases and Practice-based Research Networks (PBRNs). Clinical databases are broader and usually more comprehensive in scope whereas registries tend to be more focused and condition-specific. Clinical databases collect comprehensive patient data for more general purposes, such as patient billing and cost, administrative tasks, patient management (e.g., electronic health records), or ad hoc research. Data collection and the use of research in clinical databases are improvised or created as needed rather than being systematic or pre-planned, as is the case with clinical registries. Also, by contrast, PBRNs are organized collaborations of healthcare clinicians and practices that work together to answer healthcare questions, conduct research in everyday practice settings, and focus on care delivery and implementation science.  Unlike clinical registries, which use a standardized collection of clinical outcomes data for a pre-specified condition or set of conditions, PBRNs collect data for both prospective interventional trials and implementation research. While PBRNs may utilize clinical registry data collection modalities, they may also employ a broader range of data sources.

Rationale for this Review:

Clinical outcomes data are fundamental to answering important research questions as they form the foundation of evidence-based practice, support quality improvement and patient safety initiatives, enhance patient-centered care, facilitate regulatory approval, inform health policy, and advance research methodologies. Clinical registries amass large datasets that are cumulative over time, resulting in large sample sizes available for observational studies and pragmatic clinical research questions. By leveraging clinical outcomes data, clinicians and researchers can collaborate to enhance patient care and improve health outcomes.

When systematically collected and aggregated over the long term, clinical outcomes data in registries can provide powerful, actionable information with greater feasibility, cost-effectiveness, and longer-term follow-up compared to time-limited, often resource-intensive clinical trials, enabling clinicians to refine clinical care pathways, optimize treatment outcomes over the longer term, and personalize care for individual patients. Over the past 30 years such registries have also been used by clinicians, researchers, industry leaders, and policymakers to enhance patient care and quality of life, update clinical care guidelines, and inform healthcare policy. The adoption of automated technologies, such as smartphones and portable computing devices, has facilitated the rapid expansion of clinical outcomes registries across various healthcare disciplines worldwide. These advancements have yielded impactful clinical research derived from real-world healthcare settings. When applied with proper analytic techniques, registry studies can approach the methodological rigor of randomized controlled trials. Furthermore, registries serve as valuable resources for training researchers and clinical education.

Chiropractic is a global profession with practitioners now established in over 90 countries across 6 continents. As the profession continues to integrate into mainstream healthcare systems worldwide, the need for robust clinical evidence to inform best practices becomes increasingly important. Clinical outcomes registries may represent a valuable opportunity for the global chiropractic community to systematically document patient care and outcomes in diverse healthcare settings and cultural contexts.

Given the value of clinical registries in several key professional domains, knowledge of existing chiropractic registries is essential. The objective of this scoping review was to map chiropractic clinical outcomes registries worldwide.

Our full manuscript is available here: https://rdcu.be/enEbW