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 ICN2 Database and the Network itself are a rich resource that can be used to develop study designs, engage patients and clinicians as collaborators, and conduct observational and comparative effectiveness studies. With funding from the Patient-Centered Outcomes Research Institute (PCORI), the Network is also building its capability to conduct patient-centered clinical trials.

Collaborate with ImproveCareNow

Policies & ICN2 Database

View our research policy and guidance documents to learn about the expectations surrounding data sharing and authorship:

Information about the ICN2 Database, including the type of information collected, can be viewed below.  We encourage you to use these documents to determine if the ICN2 Database has the data to answer your research questions:

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 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 collection of 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.

Comprehensive Research Learning

Each of the videos below focuses on a different research topic. They provide more in-depth knowledge of the research process. Each is about one hour in length.

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.

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