Published Studies
Year | Publication | Categories |
---|---|---|
2021 |
A Patient-Prioritized Agenda for Information Needs During the COVID-19 Pandemic: A Qualitative Study of Patients With Inflammatory Bowel Disease
Summary Over the course of the COVID-19 pandemic, there has been a high level of patient demand for information about COVID-19 and its impacts on the inflammatory bowel disease (IBD) community. IBD Partners and the Crohn's & Colitis Foundation conducted a series of focus groups early on in the pandemic (between August and October of 2020). Focus groups are a form of group interview and are particularly useful for exploring people's knowledge and experiences. Full Scientific Manuscript Keywords covid; covid-19; vaccine; pandemic; focus group; |
Other |
2020 |
Trends and Characteristics of Clinical Trials Participation for Inflammatory Bowel Disease in the United States: A Report From IBD Partners
Summary Between 2011 and 2018, participation in randomized controlled trials (RCTs) for inflammatory bowel disease declined while available RCTs in-creased. Younger patients, patients in community settings, and patients with milder disease were underrepresented in RCTs. Nonparticipants had disease activity failing remission criteria, highlighting the role of RCT participation. Full Scientific Manuscript Keywords Clinical; Trials; older; academic; medical center; severe; disease; sicker; vedolizumab; ustekinumab; tofacitinib; under; age; community; facilities; underrepresented; newest; therapies; free; medication; procedures; all patients have; opportunity; |
Research Methods, Alternative Therapies, Medications |
2018 |
Crohn s and Colitis Foundation of America Partners Patient-Powered Research Network - Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network
Summary Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants' experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN. Full Scientific Manuscript Keywords PPRN; Disease management; Online resources; |
Lifestyle, Health Maintenance, Research Methods |
2016 |
Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease
Summary Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll. Full Published Manuscript Keywords cohort; Crohn's Disease; Crohn's; CD; population; patient-reported outcomes; symptoms; physical health; social health; psychosocial health; |
Research Methods, Study Updates, Health Maintenance |