ArticleJournal of the American Medical Informatics Association : JAMIA2013
An i2b2-based, generalizable, open source, self-scaling chronic disease registry.
Article in Journal of the American Medical Informatics Association : JAMIA, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01697254 (The CARRA Registry), which is not on this map. Cited by 45 papers.
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.
The CARRA Registry
Who cites it
45 citing papers in PubMed.
- A method to enable clinical and translational research teams with custom real-world data from electronic health record systems.Journal of clinical and translational science · 2026Article
- Selecting medical research data platforms for translational biomedical research: a five-tier overview and requirement-weighted assessment framework.Frontiers in digital health · 2026Review
- Developing a Data Quality Standard Primer for Cardiovascular Risk Assessment from Electronic Health Record Data Using the DataGauge Process.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2021Article
- Scale-up of the Accrual to Clinical Trials (ACT) network across the Clinical and Translational Science Award Consortium: a mixed-methods evaluation of the first 18 months.Journal of clinical and translational science · 2020Article
- Catch Me if You Can: Acute Events Hidden in Structured Chronic Disease Diagnosis Descriptions Show Detectable Recording Patterns in EHR.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2020Article
- Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases.Pediatric rheumatology online journal · 2019Observational
- Demographic, clinical, and treatment characteristics of the juvenile primary fibromyalgia syndrome cohort enrolled in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry.Pediatric rheumatology online journal · 2019Observational
- The REDCap consortium: Building an international community of software platform partners.Journal of biomedical informatics · 2019Article
- The Association of Black Cardiologists (ABC) Cardiovascular Implementation Study (CVIS): A Research Registry Integrating Social Determinants to Support Care for Underserved Patients.International journal of environmental research and public health · 2019Article
- Data and knowledge management in translational research: implementation of the eTRIKS platform for the IMI OncoTrack consortium.BMC bioinformatics · 2019Article
- Lost in Translation: Diagnosis Records Show More Inaccuracies After Biopsy in Oncology Care EHRs.AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2019Article
- How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study.Journal of medical Internet research · 2018Article
- HiGHmed - An Open Platform Approach to Enhance Care and Research across Institutional Boundaries.Methods of information in medicine · 2018Article
- Identifying Unmet Treatment Needs for Patients With Osteoporotic Fracture: Feasibility Study for an Electronic Clinical Surveillance System.Journal of medical Internet research · 2018Article
- Integrating Multimodal Radiation Therapy Data into i2b2.Applied clinical informatics · 2018Article
- Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.Journal of patient-reported outcomes · 2018Article
- Biopsy Records Do Not Reduce Diagnosis Variability in Cancer Patient EHRs: Are We More Uncertain After Knowing?AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2018Article
- The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months.Pediatric rheumatology online journal · 2017Article
- What incentives increase data sharing in health and medical research? A systematic review.Research integrity and peer review · 2017Review
- Applying probabilistic temporal and multisite data quality control methods to a public health mortality registry in Spain: a systematic approach to quality control of repositories.Journal of the American Medical Informatics Association : JAMIA · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
Abstract
objectiveRegistries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. MATERIALS AND
methodsFocusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions.
resultsThe 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. DISCUSSION: We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing.
conclusionsThe implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.
Indexed as
Identifiers
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.