Research in ImproveCareNow
ImproveCareNow is building a reusable scientific infrastructure to make learning how to improve the health outcomes of children and adolescents with IBD faster, cheaper and better. Families, patients, clinicians and researchers are all working together to prioritize learning objectives and research questions, design and carry out studies and implement the results.
The Outcomes Registry Database is a rich resource that can be used to develop study designs, engage patients and clinicians as collaborators, and conduct observational and comparative effectiveness studies.
Collaborate with ImproveCareNow
Policies & Outcomes Database
View our research policy and guidance documents to learn about the expectations surrounding data sharing and authorship:
Information about the Outcomes Database, including the type of information collected, can be viewed below. We encourage you to use these documents to determine if the Outcomes Database has the data to answer your research questions:
- CRF (Current)
- ICN Research Data Dictionary
- CRF V1 (2007 Discontinued)
- CRF V2 (2010 Discontinued)
- CRF V3 (2018 Discountinued)
- CRF V4 (2019 Discountinued)
Through the Pathway to Mastery launch in 2019, an opportunity was identified to improve the guidance for the Sustained Remission definition for IBD patients. Clinician leaders in the sustained remission pathway collaborated with the network to make changes to the definition to better identify when a patient is in continuous remission.
Research Change Package
This change package was a result of a project by participating care centers, patients, parents and other collaborators to identify existing best practices in research. This document aims to help care center teams progress more efficiently and effectively through their research projects. It shares best practices on all phases of research, including legal and IRB approval, recruitment, communications and other key topics. Overall, a center should be able to recruit more patients, provide an improved and more efficient experience for potential participants, and better communicate about opportunities to participate in research studies.
- Research Change Package - A Guide to Improving Your Research Journey
Research Advocate Training Materials
ImproveCareNow collaborates with patients and families to provide the tools and knowledge to effectively participate and make decisions for children with IBD. Research is an important component that helps clinicians, patients, and parents find answers to questions about treatment plans, medication, and the disease itself.
We invite patients and parents to investigate the resources below to gain further understanding of the research process. Additionally, we welcome any feedback about other sources regarding the research process that would be useful to include.
Clinical Research 101
David Wohl (parent of a child with Crohn's disease) and Mike Kappelman (pediatric gastroenterologist at UNC Children's), in collaboration with the Crohn’s & Colitis Foundation, ImproveCareNow, and NASPGHAN, have developed a slide set and pre-recorded webinar to help patients & families understand more about the purpose and process of clinical research, including clinical trials.