ArticleJournal of the American Medical Informatics Association : JAMIA2016
Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners).
Article in Journal of the American Medical Informatics Association : JAMIA, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
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- Patient-Focused Drug Development and Real World Study.Integrative medicine research · 2025Review
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- DAMP-ing IBD: Extinguish the Fire and Prevent Smoldering.Digestive diseases and sciences · 2025Review
- mHealth Physical Activity and Patient-Reported Outcomes in Patients With Inflammatory Bowel Diseases: Cluster Analysis.Journal of medical Internet research · 2024Article
- Application of the Delphi method to the development of common data elements for social drivers of health: A systematic scoping review.Translational behavioral medicine · 2024Article
- Comparing Patient-Reported Outcomes Among Anti-TNF-Experienced Patients with Crohn's Disease Initiating Vedolizumab Versus Ustekinumab.Digestive diseases and sciences · 2023Article
- Comparing Patient-Reported Outcomes Among Anti-TNF Experienced Patients With Ulcerative Colitis Initiating Vedolizumab Versus Tofacitinib.Crohn's & colitis 360 · 2023Article
- Beyond the Eckardt Score: Patient-Reported Outcomes Measures in Esophageal Disorders.Current gastroenterology reports · 2021Review
- Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work.JMIR human factors · 2021Article
- The patient journey to diagnosis and treatment of congenital sucrase-isomaltase deficiency.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Observational
- Challenges and Opportunities in Social Media Research in Gastroenterology.Digestive diseases and sciences · 2021Article
- Potential Benefits and Risks Resulting From the Introduction of Health Apps and Wearables Into the German Statutory Health Care System: Scoping Review.JMIR mHealth and uHealth · 2020Article
- Barriers and Facilitators to the Adoption of Mobile Health Among Health Care Professionals From the United Kingdom: Discrete Choice Experiment.JMIR mHealth and uHealth · 2020Article
- Disparities in Secure Messaging Uptake Between Patients and Physicians: Longitudinal Analysis of Two National Cross-Sectional Surveys.Journal of medical Internet research · 2020Article
- Article
- Digital Health Apps in the Clinical Care of Inflammatory Bowel Disease: Scoping Review.Journal of medical Internet research · 2019Article
- Ontology-Based Interactive Visualization of Patient-Generated Research Questions.Applied clinical informatics · 2019Article
- Exploring the potential benefits of digital health technology for the management of COPD: a qualitative study of patient perceptions.ERJ open research · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors.
Funding
Abstract
The Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn's and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.