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Start by clicking on a request button or watch our Request Tutorial to learn more.Featured News
New Features and Enhancements Coming to NIDDK-CR: A Smarter, Sleeker Experience!
We’re thrilled to announce exciting system upgrades to the NIDDK-CR platform! Get ready for dynamic new features and functionalities, including interactive graphs, comprehensive study information pages, advanced file exploration tools, and next-level search experience. These enhancements are designed with users in mind to make locating and accessin. . .
Coming Soon! NIH Data Sharing Index (S-index) Challenge
The S-index challenge, led by the National Eye Institute (NEI), aims to incentivize and reward data sharing by promoting a new metric, the S-index, that will assess how effectively researchers sh. . .
2024 DataWorks! Prize Challenge – Phase 1 now open!
The Federation of American Societies for Experimental Biology (FASEB) and the National Institutes of Health (NIH) partnered together to host the 2024 DataWorks! Prize. This challenge is a collaboration with the seven generalist repositories participating in the NIH-funded Generalist Repositories Ecosystem Initiative (GREI) and will focus on best pr. . .
Winners of the Data Centric Challenge presented their winning solution at the May 10th ODSS Data Sharing and Reuse Seminar – Recording Available
Winners of the Intermediate/Advanced-level Data Centric Challenge, Dr. Ali Loveys and Fiona Meng from FI Consulting, presented Laying the Foundation for AI-Ready Data at the ODSS Data Sharing and Reuse Seminar on May 10, 2024. The FI Consulting team successfully consolidated and unified multiple TrialNet data sets and identified data outliers, then. . .
New NIDDK Central Repository Policy Released!
NIDDK Central Repository (NIDDK-CR) has released a revised policy that aligns with the NIH Data Management and Sharing (DMS) policy and NIDDK DMS Guidance: https://grants.nih.gov/grants/guide/notice-files/NOT-DK-24-003.html. More details and complete . . .
NIDDK Central Repository Data Centric Challenge – Winners Announced!
In September 2023, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repository announced the Data Centric Challenge aimed at enhancing NIDDK datasets for future artificial intelligence (AI) applications. Challenge participants were tasked to generate an AI-ready dataset that can be used for future data challenges. . .
Ready for use: Study Digital Object Identifiers (DOIs) and citations to increase research visibility
DOIs are now available for every NIDDK-CR R4R study! DOIs increase resource visibility and accessibility and enable appropriate credit citation and interoperability. Researchers are encouraged to use them when making public releases using NIDDK-CR R4R resources. A study’s DOI can be found at the top of the study’s overview page along with citation . . .
NIH’s New Data Management and Sharing Policy is in effect!
As of January 25, 2023, the NIH Policy for Data Management and Sharing (DMS) is in effect. All research that is funded in whole or in part by NIH is required to submit a DMS plan outlining how scientific data and accompanying . . .
Updates to the NIDDK-CR Resources for Research (R4R) biospecimen request process are coming soon
This revamped, streamlined process for requesting biospecimens incorporates user feedback to better facilitate access to biospecimens. Certain requests will still require an X01 Resource Access Award; however, many will need only an administrative review or will leverage existing grant applications peer review if one was submitted. The new request . . .
NIDDK Central Repository joins Vivli to strengthen and expand the data ecosystem
Vivli and the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), part of the National Institutes of Health (NIH), will be working together to broaden exposure and strengthen NIDDK data ecosystem. As part of Vivli’s award to serve as one of six generalist repositories that will work with the NIH Office of Data Science Strategy . . .
NLP-based CDE tagging to improve FAIRness of studies in the NIDDK Central Repository
The NIDDK Central Repository (CR) plays a crucial role in making data Findable, Accessible, Interoperable, and Reusable (FAIR). To enhance FAIRness of studies in the Repository, NIDDK and Booz Allen Hamilton, the current Data Repository contractor, have piloted a natural language processing (NLP) pipeline project for harmonizing study variables wit. . .
Events
NIH Security Best Practices for Users of Controlled-Access Data | 01/08/2025 - 01/10/2025
Save the Date: Join the National Institutes of Health (NIH) for "Community Days" Scheduled for:
- Wednesday, January 8th, 2025 from 10-11am
- Friday, January 10th, 2025 from 10-11am
Who Should Attend: All researchers and their institutional officials who have access to or are planning to request access to use controlled-access genomics data hosted by NIH data repositories.
During these information sessions, NIH will provide users of NIH Controlled Access Data repositories and their institutions an overview of Guide Notice NOT-OD-24-157 "Implementing Update for Data Management and Access Practices Under the Genomic Data Sharing Policy" and related FAQs.
NIH will provide an overview of the requirements, assist organizations with understanding how they can be compliant with the requirements, and answer any questions users and their institutions have. Users and their institutions are encouraged to submit their questions by December 27th to ensure answers are provided during the informational sessions. Questions may be submitted to gds@mail.nih.gov .
Updates to R4R Resources
12/23/2024 | Data Update for CRIC
Data have been updated for the Chronic Renal Insufficiency Cohort Study (CRIC) study. This update includes updated datasets containing additional follow up.
If you have already been approved to rec. . .
12/12/2024 | Data Update for TEDDY
Data have been updated for The Environmental Determinants of Diabetes in the Young (TEDDY) study. This update includes TEDDY data through the TEDDY 2022 funding period and additional analysis datasets. . .
12/10/2024 | New Study: MAPP Twin
A new study, Multidisciplinary Approach to the Study of Pelvic Pain Twin Study (MAPP Twin), has been posted to the NIDDK Central Repository. Data and specimens from this study are now available for re. . .
11/27/2024 | Data Update for CFLD PUSH
Data have been updated for Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis Liver Disease (CFLD PUSH). This update includes final study datasets.
If you have already be. . .
10/29/2024 | Data Update for TN19
Data have been updated for Antithymocyte Globulin (ATG) and Pegylated Granulocyte Colony Stimulating Factor (GCSF) in New Onset Type 1 Diabetes (TN19). This update includes additional flow analysis da. . .
10/07/2024 | New Study: ELASTIC-CF
A new study, Longitudinal Assessment of Transient Elastography in Cystic Fibrosis (ELASTIC-CF), has been posted to the NIDDK Central Repository. Data from this study are now available for request.
. . .
09/20/2024 | New Study: VIEW
A new study, Validation of Bladder Health Instrument for Evaluation in Women (VIEW), has been posted to the NIDDK Central Repository. Data from this study are now available for request.
The VIEW st. . .
09/12/2024 | New Study: BASIC
A new study, Biliary Atresia Study in Infants and Children (BASIC), has been posted to the NIDDK Central Repository. Analysis data from this study are now available for request as well as three analys. . .
08/21/2024 | New Study: RADIANT
A new study, Rare and Atypical DIAbetes NeTwork (RADIANT), has been posted to the NIDDK Central Repository. Data from this study are now available for request.
The Rare and Atypical DIAbetes NeTwor. . .
08/15/2024 | Data Update for LOGIC
Data have been updated for the Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis (LOGIC) study. This study is part of the Childhood Liver Disease Research Network (ChiLDReN). An additio. . .
07/17/2024 | Data Update for PROBE
Data have been updated for A Prospective Database of Infants With Cholestasis (PROBE). This update includes an analysis dataset from PROBE. Additionally, this update includes three analysis datasets . . .
07/16/2024 | Data Update for CUTIE
Data have been updated for Careful Urinary Tract Infection Evaluation (CUTIE). This update includes an additional renal scan dataset.
If you have already been approved to receive the CUTIE data pac. . .
07/02/2024 | Data Update for HALT-C
Data have been updated for The Hepatitis C Antiviral Long-Term Treatment Against Cirrhosis Trial (HALT-C). This update includes Biopsy Adverse Event data.
If you have already been approved to recei. . .
06/20/2024 | Data Update for DPP
Data have been updated for Diabetes Prevention Program (DPP). This update includes PFAS (per- and polyfluoroalkyl substances) Secondary data.
If you have already been approved to receive the DPP da. . .
06/20/2024 | Data Update for DPPOS
Data have been updated for Diabetes Prevention Program Outcomes Study (DPPOS). This update includes Phase 3 data and PFAS (per- and polyfluoroalkyl substances) Secondary data.
If you have already b. . .
06/04/2024 | Data Update for TEDDY
Data have been updated for The Environmental Determinants of Diabetes in the Young (TEDDY) study. This update includes additional analysis datasets for M199, M208, M233, and M239.
If you have alrea. . .
05/21/2024 | Data Update for TN10
Data have been updated for Anti-CD3 Mab (Teplizumab) for Prevention of Diabetes in Relatives At-Risk for Type 1 Diabetes Mellitus (TN10) study. This update includes additional secondary outcomes analy. . .
05/09/2024 | Data Update for START
Data have been updated for A Randomized, Double-Blinded, Placebo-Controlled Trial of Corticosteroid Therapy Following Portoenterostomy in Infants with Biliary Atresia (START) study. This update includ. . .
05/09/2024 | Data Update for FORCE
Data have been updated for FibroScan in Pediatric Cholestatic Liver Disease (FORCE) study. This update includes an additional biomarkers analysis dataset.
If you have already been approved to recei. . .
04/19/2024 | New Study: IMAGINE-II
A new study, Extension Study to Evaluate the Long-Term Safety and Durability of Effect of LUM001 in the Treatment of Cholestatic Liver Disease in Pediatric Subjects with Alagille Syndrome (IMAGINE-II). . .
04/19/2024 | New Study: PRIME
A new study, A Phase I/IIa Trial of Intravenous Immunoglobulin (IVIG) Therapy Following Portoenterostomy in Infants with Biliary Atresia (PRIME), has been posted to the NIDDK Central Repository. Data . . .
04/02/2024 | New Study: NAFLD Pediatric Database 2
A new study, Nonalcoholic Fatty Liver Disease Pediatric Database 2 (NAFLD Pediatric Database 2), has been posted to the NIDDK Central Repository. Data and biospecimens from this study are now availabl. . .
03/20/2024 | Data Update for Teen-LABS
Data have been updated for the Adolescent Bariatrics: Assessing Health Benefits & Risks (Teen-LABS) study. This update includes data through the end of the study and additional analysis datasets.
I. . .
02/08/2024 | New Study: HBRN Immunology Cohort
A new study, Immune Regulation and Costimulation in Natural History of Chronic Hepatitis B (HBRN Immunology Cohort), has been posted to the NIDDK Central Repository. Data from this study are now avail. . .
02/06/2024 | New Study: HBRN Immunology Treatment
A new study, Immune Regulation and Costimulation in Natural History and Therapeutic Outcome of Chronic Hepatitis B (HBRN Immunology Treatment), has been posted to the NIDDK Central Repository. Data fr. . .