# Data Management Core

> **NIH NIH U2C** · CHILDREN'S HOSP OF PHILADELPHIA · 2020 · $1,382,711

## Abstract

PROJECT SUMMARY - Data Management Core.
The key objective of the Data Management Core (DMC) of the INCLUDE Data Coordinating Center (DCC) is to
develop and sustain data sharing pathways to fulfill the Center’s mission to study a large cohort of people with
Down syndrome (DS) to accelerate research in the mechanisms driving and modulating comorbidities in this
population. The DMC will build upon the processes and platforms we have deployed in prior DCCs to facilitate
the data ingestion and harmonization of high priority clinical, biospecimen, and molecular data identified by the
INCLUDE community. Our vision - shared and augmented by our partner teams in the DCC cores - is to ensure
that data from INCLUDE cohorts are highly accessible and (re)usable by the research community to drive
integrative and innovative approaches to DS research, and to spark insights from and within adjacent domains
with shared biomolecular and phenotypic traits.
To accomplish this ambitious goal, we will first develop a data governance structure to maximize use and re-use
of INCLUDE data in order to address disparities and improve outcomes for people with DS . Second, in
coordination with INCLUDE stakeholders, we will document use-cases to ensure the activities of the DCC reflect
the priorities and concerns of the DS community, and map these use-cases to data models and standards to
support the harmonization and interoperability of INCLUDE data. We will leverage and extend existing data
models from the biomedical commons communities, and define quality control metrics for INCLUDE data types.
Third, we will enhance our platform interfaces to support the transfer, validation, and aggregation of INCLUDE
data within our data management system. DMC personnel will work hand-in-hand with data contributors to
ensure the rapid and conformant transfer of multiple data types. Fourth, we will develop bioinformatic workflows
and pipelines for the standardized processing of INCLUDE data within an integrated and highly scalable compute
environment. Fifth, we will build and deploy a virtual biorepository to enable federated biospecimen sharing
across the INCLUDE network and the DS research community.
The DMC team - in close coordination with the Administrative and Outreach Core and the Data Portal Core - will
leverage our deep experience in data management and coordination, community building, and biomedical
research to create a world-class resource for data sharing, access, and integrative analysis that would enable
novel investigations into DS and its comorbidities across the lifespan.

## Key facts

- **NIH application ID:** 10108753
- **Project number:** 1U2CHL156291-01
- **Recipient organization:** CHILDREN'S HOSP OF PHILADELPHIA
- **Principal Investigator:** Justin Guinney
- **Activity code:** U2C (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,382,711
- **Award type:** 1
- **Project period:** 2020-09-26 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10108753

## Citation

> US National Institutes of Health, RePORTER application 10108753, Data Management Core (1U2CHL156291-01). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10108753. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*