Resources
Data as Innovation
The NIDDK IBD Genetics Consortium generates and manages several sample and data resources for use by the research community. The IBDGC has played a leadership role in the International IBD Genetics Consortium, and its Data Coordinating Center (DCC) has compiled, harmonized and curated genotype and phenotype data from over 100k participants recruited from over 18 countries.
Resources
NIDDK Central Repository
A sample repository containing EBV Transformed Cell Lines, DNA and serum collected from IBD-affected individuals and controls. These samples are available through the NIDDK Central Repository, together with detailed phenotype data collected using the Consortium’s validated phenotype forms.
dbGaP
Large cohorts of IBD-affected individuals and controls who have provided DNA samples and have been phenotyped according to Consortium standards. The Consortium has genotyped these samples and those data are available through dbGaP. Below are links to available datasets provided by the IBDGC.
Open Science Framework (OSF)
Open Science Framework (OSF) is a free and open-source project management tool that makes it easy to collaborate throughout a project's lifecycle. The IBDGC utilizes OSF to organize documentation around publications to better enable reproducibility in the scientific community.
Supporting resources
BuildClinical
BuildClinical uses data-mining and machine-learning approaches to engage potential research participants via internet search engines and social media. Expanding to remote recruitment will enable patients from all over the United States to participate in our research studies.
REDCap
The consortium leverages the REDCap data capture platform as an interface between clinical and research patient contexts to generate detailed phenotype data. In addition to those outputs, a variety of custom-built data products are generated from REDCap and made available to members of the consortium. Project-specific phenotype forms within REDCap can be made available upon request.
LabKey
LabKey offers a cloud-managed sample management software that helps the IBDGC track the lifecycle of our samples from the time of registration to maintain integrity and chain-of-custody of all samples collected for our studies. The sample management system is also CFR Part 11 and HIPAA compliant to meet regulatory requirements.
Requesting Data
Data Use Agreement
DUA Instructions
All individuals seeking to access pre-publication summary statistics need to submit a signed DUA
Download the form here.
Complete the document using a pdf editing tool (e.g. adobe acrobat, apple preview).
Initial all appropriate appendices:
Appendix: IBDGC Internal Use Only - you are an investigator in the NIDDK IBDGC
Appendix: IIBDGC Internal Use Only - you are seeking pre-publication international summary statistics
Appendix: Restricted Data - you have a special case with restricted data (unlikely)
Send the signed copy to requests@ibdgc.org named ibdgc-dua-v2.2_firstname-lastname.pdf.