# Developing and applying common data elements to enhance clinical and translational research, healthcare access and outcomes in inflammatory bowel disease

> **NIH NIH U24** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2024 · $491,500

## Abstract

ABSTRACT
The inflammatory bowel diseases (IBD) are comprised equally of two major subtypes, Crohn's disease and
ulcerative colitis, with a peak age of onset between 15-30 years of age. As for many immune-mediated
inflammatory diseases (IMID), IBD incidence is rising world-wide, especially among diverse populations.
Although IBD prevalence in LatinX and Black populations in North America is lower, compared to European
ancestry populations, outcomes are often worse, for myriad reasons, including diagnostic delays and reduced
access to care and disease-modifying treatments.
The NIDDK IBD Genetics Consortium (IBDGC) was established in 2002, with the major goal of developing a
thorough understanding of the genetic structure of IBD to elucidate the pathophysiology of IBD for improved
patient outcomes. The NIDDK IBDGC is comprised of 7 Genetics Research Centers (GRCs) sited at major IBD
centers in the United States and Canada, and a Data Coordinating Center (DCC). Biospecimens, immortalized
cell lines and phenotypic and genomic datasets from the IBDGC are available via the NIDDK Central Repository
and dbGaP. The IBDGC also acts as a coordinating center for the International IBD Genetics Consortium. The
major priority of the IBDGC during the current funding period (2022-2027) is to enhance recruitment of LatinX
and Black IBD cohorts, for both social justice and scientific reasons. The NIDDK IBDGC has developed protocols
and workflows to enhance diverse patient recruitment throughout North America (including direct to patient),
reaching beyond highly resourced IBD-specialized centers.
Common data elements (CDEs) for IBD do not currently exist. Therefore, in this supplement request, the IBDGC
DCC, in collaboration with the University of Miami GRC and with other IBDGC investigators, is proposing
development of IBD-related CDEs for submission to the NIH CDE Repository, NIH endorsement and
dissemination. CDE development will leverage extant forms developed by the NIDDK IBDGC. Form-based,
research-focused CDEs will be integrated with major model-based research and clinical care, such as HL7/FHIR,
PheCodes, LOINC and OMOP structures, with harmonization and validation between two major health systems,
the University of Miami and the Icahn School of Medicine at Mount Sinai, New York. CDEs and form-based
models directed toward patient - primary care provider - general gastroenterologist - IBD specialist referral
efficiencies will be developed. CDEs will provide the building blocks by which AI-assisted forms and models can
be developed for patients, primary care providers, general gastroenterologists and IBD subspecialty centers.
Development of CDEs for IBD will enhance clinical and translational research in IBD, facilitate recruitment among
diverse populations, enhance opportunities for collaboration and allow extant IBD resources to be more fully
leveraged, such as the lymphoblastoid cell lines, other biospecimens and matched genetic and phenotypic data
deposited...

## Key facts

- **NIH application ID:** 11159202
- **Project number:** 3U24DK062429-25S1
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** JUDY H. CHO
- **Activity code:** U24 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $491,500
- **Award type:** 3
- **Project period:** 2024-07-01 → 2025-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11159202

## Citation

> US National Institutes of Health, RePORTER application 11159202, Developing and applying common data elements to enhance clinical and translational research, healthcare access and outcomes in inflammatory bowel disease (3U24DK062429-25S1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/11159202. Licensed CC0.

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