Clinical registries are organized systems that store standardized data on a specific population defined by a disease, condition, or procedure. Information from clinical data registries can be used to evaluate specific outcomes and compare the effectiveness of different treatments. Furthermore, they are utilized to improve quality of care and patient safety.
The Clinical Research and Registries Division strongly encourages registry endeavors for the purposes of advancing scientific knowledge and developing innovative therapies that lead to improved patient care in IR. Previous registry stakeholders include government agencies, industry manufacturers, and other professional societies.
SIR Foundation is involved in the development of various registries. SIR members have led and supported the following registries:
Venous Access: National Guideline and Registry Development (VANGUARD) Initiative
VANGUARD is a multi-disciplinary initiative that focuses on understanding and improving complications related to central venous access. One of the goals of VANGUARD is to develop a unified terminology to support the development of large database tools for data acquisition, storage, transmission, and analysis. These tools can be used to form a comprehensive registry that will allow acquisition of high quality data critical to patient-centered outcomes research.
The VANGUARD initiative was developed from an SIR Foundation RCP in October of 2014 entitled 'Critical issues in chronic central venous access and pathways for investigation.' To further develop the topic, SIR Foundation organized and held the VANGUARD Symposium in May of 2016 at the National Library of Medicine, part of the National Institutes of Health (NIH). The purpose of this planning meeting was to develop vocabulary and review registry specification. After the meeting, Kevin Baskin, MD, VANGUARD’s principle investigator, submitted two grant applications: an AHRQ (Agency for Healthcare Research and Quality) R13 application, and a Funding Source Development Grant to SIR Foundation. Further development of VANGUARD remains underway.
BenchMarket Medical (BMM) Vertebral Compression Fracture (VCF) Registry
SIR Foundation is collaborating with BMM to support interventional radiologist participation in the existing VCF Registry. Noridian Healthcare Solutions (NHS) issued a local coverage decision (LCD) requiring outcomes data for vertebral augmentation procedures. By working directly with NHS, BMM provides a standardized approach to submit information to meet these outcomes requirements and comply with the requirements of the LCD. SIR Foundation is covering the cost of participation of a limited number of sites to ensure adequate data collection for coverage purposes, as well as to ensure high quality data submission that will result in improved patient care.
Registry Assessment of Peripheral Interventional Devices (RAPID)
RAPID focuses on registry development for peripheral arterial intervention. Standard data elements related to the care and treatment of patients with peripheral artery disease are being developed to create a structured dataset that supports pre‐ and post‐market assessment, quality improvement, and safety surveillance of peripheral interventional devices. SIR members have been involved in the initial stages, and they have attended previous planning meetings. SIR continues to participate as an important stakeholder.