Registry Science: Technological Considerations for Far Reaching Impact on Evaluating Patient Outcomes
While registries and clinical trials have many similarities in how they are designed and managed, there are some key differences that can have a huge impact on the success of a registry. Unlike a clinical trial which usually involves active intervention through a specially designed protocol on a subject population that has been carefully selected through strict inclusion and exclusion criteria, a registry utilizes observational methods to study an organized set of data across a broad range of patients that are being cared for through their regular protocols of care. While the former requires a technology platform that can support a highly structured process in a study-centric manner, the latter benefits from a system that can evolve dynamically and is more patient-centric. Having one platform that can support both models is an ideal ecosystem for comprehensive research and analytics across multiple types of research projects.
Over the years, registries have been a deep source of knowledge that have helped healthcare communities better understand the natural history of diseases, improve the effectiveness of care protocols, drive policies and guidelines for efficiency, and trigger far reaching impact on patient care in general. The Children’s Hospital Neonatal Database is one such example of a registry that is transforming care for medically complex infants. In just a few years, a carefully designed database has yielded new measures that have become national standard scoring criteria in U.S. News & World Report Best Children’s Hospital Surveys. What’s more, according to “Transforming Care for Medically Complex Infants: Accomplishments & Future Directions of the CHNC and CHND (white paper),” CHND’s multi-center QI collaboratives have resulted in “a 20% decrease in central line associated blood stream infections with $69,000 of attributable cost savings per each averted infection.” One such collaborative called STEPPIN has demonstrated “a 47% decrease in postoperative hypothermia in [sick newborns requiring surgery… and] decreased post-operative communication failures by 21% and post-operative respiratory care failure by 64%.” (p.2) 
Ultimately, the vision is to integrate data not just across multiple systems but also across multiple registries. The Children’s Hospital Neonatal Consortium (CHNC) has taken a giant step forward in this direction. It is currently working with other registries nationally and internationally to harmonize data fields and definitions of diseases in a population of medically complex infants requiring specialized newborn intensive care, with the goal to have global impact on improving outcomes in this vulnerable patient population. As a result, there are unprecedented opportunities to make “interesting comparisons of care and outcomes with these data sets” and to understand “variability in practice across sites.” (p. 585) 
Indeed, institutions and collaboratives such as CHNC are closer to achieving their goals than ever before. With advancement in technology, setting up a registry is no longer a laborious and lengthy process and can now reach a wider audience through web and mobile device access. It has also become easier to dynamically add, or alter data elements being captured, as the objectives of the registry evolve over time. Other technological improvements like stronger system integrations and superior data reporting capabilities ensure that data is cleaner, faster to collect, and easily accessible for analysis.
Some ongoing considerations relevant to this area that will likely see evolution in the near future include improving processes around the consenting and regulatory procedures for patient inclusion in a registry, harmonization of data from multiple systems that have huge variations in data models, and integration across multiple systems as well as multiple registries. Undoubtedly, technology will continue to play a pivotal role in improving management and operations of registries across the world.
1. CHNC Executive Committee (May 2017) “Transforming Care for Medically Complex Infants: Accomplishments & Future Directions of the CHNC and CHND.”
2. Murthy KM, Dykes FD, Padula MA, Pallotto, EK, Reber KM, Durand DJ, Short BL, Asselin JM, Zaniletti I, Evans JR: The Children’s Hospitals Neonatal Database: An Overview of Patient Complexity, Outcomes and Variation in Care. J Perinatol 34(8): 582-6, Aug 2014 Notes: doi: 10.1038/jp.2014.26. Epub 2014 Mar 6.