Clinipace Extends Research Partnership with the ImproveCareNow Collaborative to Accelerate Care and Treatment of Pediatric IBD

The ImproveCareNow Collaborative, formerly the PIBDNet Trailblazer Improvement Collaborative, allows selected practice sites to work together to improve the care and outcomes associated with Crohn’s disease and ulcerative colitis. ImproveCareNow’s mission is to enable pediatric gastroenterologists in North America to work together to find the best treatments for these diseases. The most common chronic pediatric gastrointestinal disorders, these conditions affect 100,000 children and adolescents in the USA.

Establishing Original PIBDNet Trailblazer Registry
In 2005, Clinipace helped establish and manage the original PIBDNet Trailblazer registry, operated by the University of North Carolina at Chapel Hill and the University of Vermont with support and assistance from the American Board of Pediatrics. The original registry was designed to evaluate over time children and adolescents with IBD in an effort to better understand this debilitating disease, methods of prevention and treatment, and ultimately improve care.

The network’s initial patient registry was created using a homegrown solution. However, this system presented several challenges with regards to cost and complexity. With over 200 sites from which to collect data, the collaborative required a solution with an easy-to-use web-based interface to enable data entry from any location that would then be available in real-time to investigators.

According to Dr. Richard Colletti, Principal Investigator of the ImproveCareNow Registry and Vice Chair of the Department of Pediatrics at the University of Vermont and Associate Chief of Vermont Children’s Hospital, “Our in-house system was costly to maintain, not to mention expensive and time consuming to change. In fact, the data management costs were so high that we would have had to end the project if we couldn’t find an alternative.”

Why Clinipace? Affordable, Flexible, Data Compliant, High-level of Customer Support, User-friendly
After exploring a number of options, Dr. Colletti’s team selected the Clinipace technology-driven data management solution. “We felt that Clinipace services would be more affordable and that it would provide the ability to make changes in a flexible and timely manner.”

In addition, Colletti appreciated the fact that the Clinipace software is compliant with FDA 21 CFR Part 11 and that Clinipace consultants are very careful about data privacy. Dr. Colletti added, “The data is stored like Fort Knox. It’s reassuring.”

According to Dr. Colletti, during the study start-up process, “The Clinipace consultants were friendly to work with. When challenges arose, we got the support we needed, and issues were resolved quickly. The Clinipace electronic data capture (EDC) platform is user-friendly, reliable, and meets all of our needs at a reasonable cost—which has enabled the project to continue its successful work. Once the system was up and running, the data entry people found it very easy to use. We rolled the platform out to 200 sites and investigators used it with very little difficulty.”

Supporting ImproveCareNow Collaborative
Pleased with the quality of data received from the first registry, the rebranded ImproveCareNow organization joined forces with Clinipace to provide the technology backbone for the ImproveCareNow collaborative.

With 16 sites across the US from Maine to California, the collaborative has already enrolled over 2,000 patients, with plans to expand to 75 practice sites within 5 years. To date, the collaborative has succeeded in improving the detection of nutrition and growth failure, standardizing disease diagnosis and initial evaluation, and building assessment of disease severity and extent into every patient visit.

Project coordinators have seen a substantial increase in the reliability of care delivery as well as a decrease in variation in care processes and outcomes among sites. Recent data, based on monthly reports from Clinipace, indicates that the collaborative is beginning to see an improvement in the remission rate, with more children having inactive disease.

“Clinipace’s technology and data management services allow us to provide our patients and families at the participating practice sites data-driven, evidence-based and reliable care tailored to their individual disease status and needs,” said Colletti. “We are now working with Clinipace to develop systems that will allow patients to provide their providers with updates on their disease activity and status between clinic visits.”

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