Development of the INCLUDE (Investigation of Co-occurring Conditions across the Lifespan to Understand Down syndromE) Project Data Coordinating Center (U2C Clinical Trial Not Allowed) | RFA OD 20 007

Opportunity Information: Apply for RFA OD 20 007

The National Institutes of Health (NIH) funding opportunity RFA-OD-20-007 supports the creation of a centralized Data Coordinating Center (DCC) for the NIH INCLUDE project, short for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE. The overall aim is to strengthen and speed up research on Down syndrome by building shared infrastructure that makes it easier for researchers to find, access, combine, and analyze data from cohorts of individuals with Down syndrome. This opportunity uses a cooperative agreement mechanism (U2C), meaning the awardee is expected to work closely with NIH program staff and other INCLUDE leadership as an active partner rather than operating completely independently. Clinical trials are not allowed under this award.

At the center of the DCC is a web-based Data Portal Core. The Data Portal is meant to be a practical, researcher-facing platform that accelerates discovery about the causes (etiology) and biological pathways behind common co-occurring conditions seen in Down syndrome. The portal is intended to enable access to aggregated and harmonized data and to support querying across datasets, which helps investigators move beyond single-study analyses and toward broader, more powerful cross-cohort research. A key emphasis is that the portal should serve not only the Down syndrome research community but also the broader scientific community, expanding the pool of researchers who can responsibly work with Down syndrome data and potentially uncover new insights.

The DCC also includes a Data Management Core that focuses on the behind-the-scenes work needed to make multi-study data useful together. This core is expected to collaborate with INCLUDE investigators and other groups generating data to support data collection and to handle processing and harmonization. In practice, that means helping ensure that data coming from different cohorts or sources can be standardized, cleaned, documented, and aligned so that variables can be compared or combined across studies. This function is essential for making the Data Portal more than a storage site, turning it into a resource that enables meaningful pooled analyses and reproducible science.

A third required component is the Administrative and Outreach Core. This core is responsible for coordinating the administrative operations of the DCC and for maintaining close working relationships with a Steering Committee and NIH INCLUDE program staff. Just as important, it is expected to provide outreach and education to the research community about how to use the Data Portal. That outreach role signals that NIH is not only funding a technical build, but also expecting active user support, training, and community engagement so the platform is widely adopted and used correctly.

Eligibility for this opportunity is broad across U.S.-based organizations and includes state, county, city or township governments, special district governments, independent school districts, public and state-controlled institutions of higher education, private institutions of higher education, federally recognized Native American tribal governments, and tribal organizations other than federally recognized governments. It also includes public housing authorities, nonprofits with or without 501(c)(3) status (other than institutions of higher education), for-profit organizations other than small businesses, and small businesses. The announcement also explicitly highlights additional eligible applicant categories such as Historically Black Colleges and Universities (HBCUs), Hispanic-serving Institutions, Tribally Controlled Colleges and Universities (TCCUs), Alaska Native and Native Hawaiian Serving Institutions, and Asian American Native American Pacific Islander Serving Institutions (AANAPISIs), as well as faith-based or community-based organizations, regional organizations, and U.S. territories or possessions.

Foreign eligibility is limited. Non-domestic (non-U.S.) entities or foreign institutions are not eligible to apply as the applicant organization. However, non-domestic components of U.S. organizations may participate, and foreign components are allowed as defined by the NIH Grants Policy Statement, which typically means specific project elements can be carried out abroad when well-justified, even though the main applicant must be U.S.-based.

Key administrative details from the source information include: the sponsoring agency is NIH; the instrument type is a cooperative agreement; the opportunity category is discretionary; and the activity category falls under Health, Income Security and Social Services. The original closing date listed is February 14, 2020, and the opportunity was created on December 13, 2019. Multiple CFDA numbers are associated with the opportunity (93.121, 93.233, 93.310, 93.837, 93.838, 93.839, 93.840, 93.853, 93.865, 93.866), reflecting the cross-NIH nature of the INCLUDE initiative and the involvement of multiple NIH institutes and centers.

• The National Institutes of Health in the health, income security and social services sector is offering a public funding opportunity titled "Development of the INCLUDE (Investigation of Co-occurring Conditions across the Lifespan to Understand Down syndromE) Project Data Coordinating Center (U2C Clinical Trial Not Allowed)" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.121, 93.233, 93.310, 93.837, 93.838, 93.839, 93.840, 93.853, 93.865, 93.866.
• This funding opportunity was created on 2019-12-13.
• Applicants must submit their applications by 2020-02-14. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For-profit organizations other than small businesses, Small businesses, Others.

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