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161
Studies with data available for request
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106
Studies with specimens available for request
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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 accessing studies and resources faster and easier than ever. Stay tuned for the release date announcement!—this is one update you won’t want to miss!
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 share data. This metric will incorporate factors such as adherence to Findable, Accessible, Interoperable, and Reusable (FAIR) standards, data timeliness, completeness of annotation, frequency of utilization in other studies, and related publications and patents. Phase 1 for this challenge is to generate a proof of concept proposal and will open on April 21, 2025 at 8:00 a.m. EDT. Check out Challenge.gov to learn more about the challenge, how to enter, eligibility, and cash prizes.
Upcoming Event: NIDDK Pre-Workshop Webinar Series 1: The bio-behavioral dimensions of diabetes heterogeneity, on October 17, 2024, from 11-1 PM EST
The AI in Precision Medicine for Diabetes and Other Chronic Diseases pre-workshop webinar series hosted by NIDDK is designed to set the stage to start the discussion in precision medicine offered by recent advances in AI and data science. The first webinar in this series titled “The bio-behavioral dimensions of diabetes heterogeneity” on Thursday, October 17, 2024, will feature presentations from Dr. Yao Qin, Assistant Professor at the University of California, Santa Barbara, and Senior Research Scientist at Google DeepMind, on “Data-Driven Machine Learning: Unlocking the Future of Closed-Loop Diabetes Care” and from Dr. Ashu Sabharwal, Ernest Dell Butcher Professor at Rice University, on “Bio-behavioral Pathways in Diabetes”. Join the webinar on Thursday, October 17, 2024, from 11-1 PM EST using the participant Zoom link:
Upcoming Event: NIDDK Pre-Workshop Webinar Series 2: Advances in AI and applications in biomedicine, on October 24, 2024, from 1-3 PM EST
The AI in Precision Medicine for Diabetes and Other Chronic Diseases pre-workshop webinar series hosted by NIDDK is designed to set the stage to start the discussion in precision medicine offered by recent advances in AI and data science. The second webinar in this series titled “Advances in AI and applications in biomedicine” on Thursday, October 24, 2024, will feature presentations from Dr. James Zou, Associate Professor at Stanford University, on “AI agents for biomedicine” and from Dr. Eran Halperin, Professor at University of California, Los Angeles, on “AI challenges and opportunities across data modalities in medicine”. Join the webinar on Thursday, October 24, 2024, from 1-3 PM EST using the participant Zoom link: https://nih.zoomgov.com/j/1605069617?pwd=Ibhhv0HU2ZB. . .
Upcoming Event: Artificial Intelligence in Precision Medicine for Diabetes and Other Chronic Diseases: Challenges and Opportunities in Developing Predictive Models and Biomarkers for Disease Initiation, Progression, Prevention, and Subtypes
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is hosting a two-day hybrid workshop on October 30-31, 2024, at the Neuroscience Center Building, 6001 Executive Blvd., Bethesda, MD. This workshop aims to bring together biomedical researchers and artificial intelligence and machine learning (AI/ML) experts, to discuss the critical challenges, crosscutting gaps, and opportunities for and actionable items in leveraging AI/ML and other recent data science advances in precision medicine, with a focus on diabetes and other chronic disease areas relevant to the NIDDK mission. For more information and to register for the workshop, visit the NIDDK website: https://www.niddk.nih.gov/news/meetings-workshops/2024/artificial-intelligence-in-precision-medicine-of-diabetes-2024
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 practices in data reuse and secondary analysis that advance human health. NIDDK-CR data may be used for this challenge in combination with data from a participating GREI repository. Phase 1 for this challenge closes on 11:59 p.m. EDT on October 23, 2024. Check out Challenge.gov to learn more about the challenge, how to enter, eligibility, and prizes.
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 enhanced raw data to ensure consistent variable representation and identified numeric and categorical “missingness” to prevent modeling bias, thus enhancing TrialNet data for AI-readiness. View the recording from the past webinar .
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-CR Resource Archival and Sharing policy are available under “Helpful Information”- “General Information”: https://repository.niddk.nih.gov/pages/general_information
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 and produce methods to enhance the AI-readiness of NIDDK data. Participation in the Challenge was tiered (i.e., beginner-level and intermediate/advanced-level) and utilized data from two longitudinal studies focused on type 1 diabetes (TEDDY and TrialNet). NIDDK is excited to announce ICF Inc. and FI Consulting as the Data Centric Challenge winners. Visit Challenge.gov to read more about the winning solutions: https://www.challenge.gov/?challenge=niddk-central-. . .
Upcoming Event: NIDDK Central Repository 20th Anniversary Workshop: Promoting Secondary Research to Accelerate Medical Breakthroughs and Innovation
Join us for a two-day virtual workshop on September 19th and 20th, from 10 a.m. to 3:00 p.m. (Eastern Time), focused on promoting secondary research to accelerate medical breakthroughs and foster innovation. Renowned guest speakers, engaging panel discussions, and informative lightning talks will shed light on the history and valuable resources of NIDDK-CR as we commemorate its 20th anniversary. Plus, don’t miss the introduction of our new analytics workspace and the launch of our data-centric challenge to enhance research capabilities. Mark your calendars now and be part of this extraordinary event! Register here: https://www.niddk.nih.gov/news/meetings-workshops/2023/central-repository-20th-anniversary-workshop
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 guidance. Additionally, a data availability statement, with data package version and DOI, is available to requestors who are submitting publications.
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 metadata will be managed and shared. NIH DMS plans should address the elements described in the Supplemental Information to the NIH DMS Policy. NIH has provided a DMS plan format on the Writing a Data Management and Sharing Plan page on the
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 process is designed to share NIDDK-CR resources with more researchers faster and easier to continue fostering innovative research. Researchers can visit the Material Counts page to explore the available resources and start a 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 under its Generalist Repository Ecosystem Initiative (GREI), NIDDK will include NIDDK Central Repository (NIDDK-CR) resources in the Vivli global clinical research data sharing platform. NIDDK-CR’s resources inclusion within Vivli as part of GREI improves discoverability and reuse of NIDDK-CR hosted resources making data more Findable, Accessible, Interoperable, and Reusable (FAIR), increases the scientific value by providing additional opportunities to the NIDDK scientific community, and maximizes the contributions of research participants. To learn . . .
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 with NIH CDEs and for identifying potential new CDEs from dataset variables mapped to ontology concepts. Initial results show highly specific mapping of variables to CDEs as well as successful identification of relevant concepts for new CDEs. The pipeline can be refined and applied to other studies to potentially improve FAIRness of the NIDDK CR. Contact Dr. Rebecca Rodriguez with any questions.
Events
There are currently no future events at this time.
Updates to R4R Resources
12/11/2024 | some more study updates
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12/11/2024 | some study updates
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12/11/2024 | TEST
TEST ITEM
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 datasets. If you have already been approved to receive the TN19 data package, please contact us through your request to download the updated data package. The TN19 study was a three-arm, 1:1:1 randomized, placebo controlled, double- blinded trial in which participants either received active Anti. . .
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. The ELASTIC-CF study assessed if combining FibroScan® measurement of liver stiffness transient elastography with ultrasound would improve the prediction of the development of a nodular liver on ultrasound and development of portal hypertension over time in children and young adults with CF. Study vi. . .
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 study prospectively collected data to test and validate bladder health instrument (BHI) items for inclusion in a final bladder health scale (BHS) that assessed the full range of bladder health of women. The study collected data from the general population using mailed surveys, from the clinical popula. . .
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 analysis datasets using combined data from the PROBE and BASIC studies. The Biliary Atresia Study in Infants and Children (BASIC) is a prospective, observational study that was established by ChiLDReN to collect pertinent clinical information and biospecimens to aid in the understanding of the disorder. . .
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 NeTwork (RADIANT) is a multicenter prospective cohort study that is dedicated to characterizing (discovering and defining) rare and atypical forms of diabetes. Individuals will be screened for evaluation of suspected atypical diabetes of unknown origin. Among the pool of evaluated individuals, those found. . .
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 additional analysis dataset is now available for request. If you have already been approved to receive the LOGIC data package, please contact us through your request to download the updated data package. The primary objectives of the LOGIC study include determining the frequency of poor growth and d. . .
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 using combined data from the PROBE, BASIC, and START studies. If you have already been approved to receive the PROBE data package, please contact us through your request to download the updated data package. PROBE is a multi-center project to establish a prospective database of clinical inform. . .
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 package, please contact us through your request to download the updated data package. The CUTIE study was an observational study designed to determine why some children develop kidney scars after urinary tract infections (UTIs). The study was aimed at understanding which children were at the greates. . .
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 receive the HALT-C data package, please contact us through your request to download the updated data package. The Hepatitis C Antiviral Long-Term Treatment Against Cirrhosis Trial (HALT-C) was a randomized clinical trial of long-term use of peginterferon alfa-2a in participants with chronic hepatitis . . .
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 data package, please contact us through your request to download the updated data package. The Diabetes Prevention Program (DPP) is a clinical trial that investigated whether modest weight loss through dietary changes and increased physical activity or treatment with the oral diabetes drug metformi. . .
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 been approved to receive the DPPOS data package, please contact us through your request to download the updated data package. The Diabetes Prevention Program Outcomes Study (DPPOS) is the long-term follow-up of the original DPP (Diabetes Prevention Program) study. The DPPOS sought to evaluate the . . .