Improve Care Now (Cambridge)
Research type
Research Study
Full title
Using patient data to transform care and improve outcomes for children, adolescents and young adults with Inflammatory Bowel Disease
IRAS ID
189605
Contact name
Matthias Zilbauer
Contact email
Sponsor organisation
ICN and University of Vermont Children's Hospital (UVM)
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Reducing unwanted variation and improving the outcomes of care for children, adolescents and young adults with Crohn’s disease, ulcerative colitis or indeterminate colitis, called Inflammatory Bowel Disease (IBD), will be difficult without a mechanism for designing new approaches to care delivery and the ability to test and translate them into actual patient care.
The ImproveCareNow network was initiated in 2006. The purpose of ImproveCareNow is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge.
The network has created a robust clinical registry, used quality improvement methods, transparent data sharing, quality improvement training and peer-to-peer knowledge transfer to reduce unwanted variations in care and achieve innovations in care delivery, resulting in improved clinical care and outcomes for children with this condition. The purpose of this project is to further design, develop and test refinements to the improvement and research network leading to improved clinical care and redesigned care delivery systems, and to conduct health services, outcomes, and comparative effectiveness (CE) research.
ICN intends to utilise the clinical database to create a virtual research data warehouse. This will be used to facilitate multiple future research purposes, and include national cohort-based outcomes and comparative effectiveness research, large cross-institutional evidence-based practice research and/or identification of participant cohorts for future prospective interventional research.
The research database uses a model involving the creation of large, aggregated, coded, de-identified datasets that can be released to individual researchers following the thorough review and approval of their research proposals by the ICN Committee. Through this process, individual researchers are able to conduct large cohort-based research projects using de-identified data.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
15/EE/0432
Date of REC Opinion
26 Feb 2016
REC opinion
Further Information Favourable Opinion