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Start by clicking on a request button or watch our Request Tutorial to learn more.Featured News
NEW – NIH Requirements for NIH Controlled-Access Data Repositories and Users
NIH recently released new requirements and expectations that impact users of controlled-access data; NIH-supported repositories that store controlled-access data; and NIH systems that provide access to controlled-access data. Please read the new guidelines to understand more about these expectations and reach out to NIDDK-CRsupport@niddk.nih.gov with any questions.
New Updates to Requestor Role
NIH has updated the security standards for controlled-access data repositories. Starting June 30, 2025, NIDDK-CR is enforcing the Requestor role as outlined in the Data and Resources Use Agreement (DUA). According to the DUA, the Requestor, also known as the Principal Investigator (PI), is the individual submitting the request for Data or Resources, must be a permanent employee of the Requesting Institution, and must have oversight authority to be primarily responsible for the Research Project. In line with NIH guidance, trainees, laboratory technicians, research assistants, graduate students, postdocs, and others without oversight authority are not eligible to submit a Data or Resource request.
Requests submitted and approved before June 30, 2025, with a Requestor who does not meet the defined criteria, are asked to identify a new PI no later than the Access Renewal period (1 year from the DUA effective date). If a suitable new PI cannot be identified, the request will be t. . .
Requests submitted and approved before June 30, 2025, with a Requestor who does not meet the defined criteria, are asked to identify a new PI no later than the Access Renewal period (1 year from the DUA effective date). If a suitable new PI cannot be identified, the request will be t. . .
DUA and MTA Releases
In support of recent security directives, the NIH has implemented updates to data security and oversight standards to protect controlled-access data provided by NIH-controlled-access repositories, including NIDDK-CR. As a result, NIDDK-CR released updated templates for its Data and Resources Use Agreement (DUA) and Material Transfer Agreement (MTA) on May 1, 2025.
The updated DUA (version 5) and MTA (version 3) address NIH data security standard requirements and clarify users’ commonly asked questions. Data/Resource requests and Data/Resource submissions initiated after May 1, 2025, are required to use the updated versions. Requests approved before May 1, 2025, are expected to adhere to the terms of use in the new version by the time of their Access Renewal (1 year from the DUA effective date).
The updated DUA (version 5) and MTA (version 3) address NIH data security standard requirements and clarify users’ commonly asked questions. Data/Resource requests and Data/Resource submissions initiated after May 1, 2025, are required to use the updated versions. Requests approved before May 1, 2025, are expected to adhere to the terms of use in the new version by the time of their Access Renewal (1 year from the DUA effective date).
Maximizing transparency: NIDDK-CR DUA, MTA, & FAQs Updates Coming Soon!
NIDDK-CR is in the process of updating the Data and Resources Use Agreement (DUA) template and Material Transfer Agreement (MTA) template language in alignment with NIH’s security practices in addition to clarifying users’ commonly asked questions. Users can expect an updated Security and Non-transferability section to address NIH security policy updates; the MTA has updated the Terms of Agreement and codified standardized use limitations. Check back soon to find links to the updated templates.
NIDDK-CR staff compiled several commonly asked DUA questions and updated the FAQs with a new DUA subsection. The FAQs page can be found here.
NIDDK-CR staff compiled several commonly asked DUA questions and updated the FAQs with a new DUA subsection. The FAQs page can be found here.
NIDDK-CR Data Science and Meet the Expert Webinar Series
Starting in February, NIDDK-CR will be hosting the monthly Data Science and Meet the Expert Webinar Series that aims to accelerate data science and AI-driven biomedical research by fostering collaboration between biomedical researchers and experts in the field. The goals of this webinar series are:
- Goal 1: Enhance understanding of the data science lifecycle, including advanced data use methodologies and AI methods, in support of the NIH data science ecosystem
- Goal 2: Encourage the generation of new research questions and projects that apply the data science lifecycle and advanced data use methodologies, leveraging data and cloud resources available to the research community from NIH/NIDDK
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.
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-. . .
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
[Tentative] Advancing Collaborative Data Science with Texera and the NIDDK-CR Analytics Platform, on October 30, 2025 from 2-3:30 p.m. ET | 10/30/2025
[This event may be rescheduled due to the government shutdown]. Join the NIDDK Central Repository for a webinar titled “Advancing Collaborative Data Science with Texera and the NIDDK-CR Analytics Platform” on October 30, 2025, from 2-3:30 p.m. ET. This session will feature presentations by experts in academia at UC Irvine and the commercial sector, geared towards researchers interested in learning about how data science pipelines and workflow tools to enhance reproducibility, collaboration, and efficiency in research and how to use these cloud-based tools. Topics will cover overview and demonstration of Texera for workflow-driven analytics, NIDDK-CR Data Challenge Management (DCM) platform for managing scientific competitions, NIDDK-CR Analytics Workbench for securely deploying ML models using AWS tools, and how these tools come together to support end-to-end research workflows. Register here: https://events.gcc.teams.microsoft.com/event/558e1db3-6fe5-4df6-b5ec-1833b01146e3@14b77578-9773-42d5-8507-251ca2dc2b06
This session is part of the monthly Data Science and Meet the Expert Webinar Series, which aims to accelerate data science and AI-driven biomedical research by fostering collaboration between biomedical researchers and experts in the field.
This session is part of the monthly Data Science and Meet the Expert Webinar Series, which aims to accelerate data science and AI-driven biomedical research by fostering collaboration between biomedical researchers and experts in the field.
Updates to R4R Resources
10/02/2025 | Data Update for LABS-3
Data have been updated for the Longitudinal Assessment of Bariatric Surgery: Psychosocial Issues and Bariatric Surgery (LABS-3) study. The legacy LABS study package has been split into three parts: Longitudinal Assessment of Bariatric Surgery (LABS-1), Longitudinal Assessment of Bariatric Surgery: Long-Term Effects of Bariatric Surgery (LABS-2), and Longitudinal Assessment of Bariatric Surgery: Psychosocial Issues and Bariatric Surgery (LABS-3).
If you have already been approved to receive t. . .
10/02/2025 | Data Update for LABS-2
Data have been updated for the Longitudinal Assessment of Bariatric Surgery: Long-Term Effects of Bariatric Surgery (LABS-2) study. The legacy LABS study package has been split into three parts: Longitudinal Assessment of Bariatric Surgery (LABS-1), Longitudinal Assessment of Bariatric Surgery: Long-Term Effects of Bariatric Surgery (LABS-2), and Longitudinal Assessment of Bariatric Surgery: Psychosocial Issues and Bariatric Surgery (LABS-3).
This update also includes two additional ancillar. . .
10/02/2025 | Data Update for LABS-1
Data have been updated for the Longitudinal Assessment of Bariatric Surgery (LABS-1) study. The legacy LABS study package has been split into three parts: Longitudinal Assessment of Bariatric Surgery (LABS-1), Longitudinal Assessment of Bariatric Surgery: Long-Term Effects of Bariatric Surgery (LABS-2), and Longitudinal Assessment of Bariatric Surgery: Psychosocial Issues and Bariatric Surgery (LABS-3).
This update also includes an additional ancillary study, Cognitive Effects of Bariatric S. . .
08/26/2025 | New Study: PROCEED
A new study, Prospective Evaluation of Chronic Pancreatitis for Epidemiologic and Translational Studies (PROCEED) has been posted to the NIDDK Central Repository. Data and specimens from this study are now available for request.
The Prospective Evaluation of Chronic Pancreatitis for Epidemiologic and Translational Studies (PROCEED) is an observational cohort study of adult participants with suspected or definite chronic pancreatitis (CP) that are prospectively ascertained and undergo yearly . . .
08/15/2025 | New Study: HOPE
A new study, HOPE Consortium Trial to Reduce Pain and Opioid Use in Hemodialysis (HOPE), has been posted to the NIDDK Central Repository. Data from this study are now available for request.
The Helping to End Addiction Long-term (HEAL) Initiative conducted the Hemodialysis Pain Reduction Effort (HOPE) Consortium Trial to Reduce Pain and Opioid Use in Hemodialysis study which was a multicenter randomized clinical trial that evaluated approaches to reducing pain and opioid use among patients w. . .
07/15/2025 | New Study: RISE
A new study, RISE FOR HEALTH (RISE), has been posted to the NIDDK Central Repository.
Data from this study are now available for request.
The RISE FOR HEALTH study (RISE) was an initiative of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium to improve bladder health in women and girls. The RISE study examined the risk and protective factors for bladder health and lower urinary tract symptoms (LUTS) in a cohort of well-characterized women and assessed the distribution. . .
05/29/2025 | Data Update for TEDDY
Data have been updated for The Environmental Determinants of Diabetes in the Young (TEDDY) study. This update includes analysis datasets for M139, M141, M148, M226, M228, M244, M246, M259, M265, and M276.
If you have already been approved to receive the TEDDY data package, please contact us through your request to download the updated data package.
The TEDDY study is a multicenter prospective cohort study that was established in response to these gaps in understanding of type 1 diabetes (T1D. . .
05/29/2025 | New Study: STENTS
A new study, Study to Enhance Understanding of Stent-associated Symptoms (STENTS), has been posted to the NIDDK Central Repository. Data and specimens from this study are now available for request.
The Study to Enhance Understanding of Stent-associated Symptoms (STENTS) was a prospective observational cohort study of individuals undergoing clinically-indicated unilateral ureteroscopy with planned ureteral stent placement for treatment of a ureteral or renal stone.
04/28/2025 | New Study: GpR 2
A new study, Gastroparesis Registry 2: Continuation of the NIDDK Gastroparesis Registry for the Characterization and Clinical Course of Gastroparesis Patients (GpR 2), has been posted to the NIDDK Central Repository. Data and specimens from this study are now available for request.
The Gastroparesis Registry (GpR) was an observational study created by the Gastroparesis Clinical Research Consortium (GpCRC) to enroll a sufficiently large number of patients to elucidate the clinical features of . . .
04/22/2025 | New Study: SVI
A new study, Stent vs. Indomethacin for Preventing Post-ERCP Pancreatitis: The SVI Trial (SVI), has been posted to the NIDDK Central Repository. Data and specimens from this study are now available for request.
The SVI study was a blinded, two-armed, non-inferiority trial where eligible patients were randomized to either the combination treatment or indomethacin alone to determine whether rectal indomethacin had no important loss of efficacy compared to the combination of rectal indomethacin . . .
03/25/2025 | New Study: GRADE
A new study, Glycemia Reduction Approaches in Diabetes: A Comparative Effectiveness Study (GRADE), has been posted to the NIDDK Central Repository.
Data and specimens from this study are now available for request.
The GRADE study was a practical, unmasked clinical trial that evaluated the effectiveness of commonly prescribed diabetes medications—when used alongside metformin—on lowering glycemia and enhancing patient-centered outcomes.
02/28/2025 | Data Update for DILIN Retro
Data have been updated for The Drug Induced Liver Injury Network Retrospective Study (DILIN Retro). This update includes additional data through the Grant 4 funding cycle (June 2023).
If you have already been approved to receive the DILIN Retro data package, please contact us through your request to download the updated data package.
The DILIN Retrospective study seeks to stimulate and facilitate research into drug-induced liver injury by retrospectively establishing a nationwide registr. . .
02/28/2025 | Data Update for DILIN Pro
Data have been updated for The Drug Induced Liver Injury Network Prospective Study (DILIN Pro). This update includes additional follow up data through the Grant 4 funding cycle (June 2023).
If you have already been approved to receive the DILIN Pro data package, please contact us through your request to download the updated data package.
The DILIN Prospective study is an ongoing multicenter observational study. Participants (2 years of age or older) were enrolled in this study if there w. . .
02/24/2025 | Data Update for CKiD
Data have been updated for The Chronic Kidney Disease in Children Cohort Study (CKiD). This update includes an additional follow up data through April 30, 2022.
If you have already been approved to receive the CKiD data package, please contact us through your request to download the updated data package.
Chronic kidney disease (CKD) is a life-long condition that often results in substantial morbidity and premature death due to complications from a progressive decrease in kidney function.. . .
01/09/2025 | New Study: PUSH-MRE
A new study, Analysis of Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis Cohort Using Advanced MRI to Characterize and Predict CF Liver Disease (PUSH-MRE), has been posted to the NIDDK Central Repository. Data from this study are now available for request.
The Analysis of Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis Cohort Using Advanced MRI to Characterize and Predict CF Liver Disease (PUSH-MRE) study was a prospective cross secti. . .
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 receive the CRIC data package, please contact us through your request to download the updated data package.
The Chronic Renal Insufficiency Cohort (CRIC) Study is an observational study that examined risk factors for progression of chronic renal insufficiency (CRI) and cardiovascular disease (CVD) . . .
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 for M38b, M70, M140, and M171.
If you have already been approved to receive the TEDDY data package, please contact us through your request to download the updated data package.
The TEDDY study is a multicenter prospective cohort study that was established in response to these gaps in unders. . .
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 request.
The Pelvic Pain Twin Study was a small, pilot study conducted at one MAPP Network Discovery site during MAPP Phase I using a unique sample of female, community-based twins from the University of Washington Twin Registry. This effort represented a co-twin control study, with pairs that wer. . .
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 been approved to receive the CFLD PUSH data package, please contact us through your request to download the updated data package.
The Prediction by Ultrasound of the Risk of Hepatic Cirrhosis in Cystic Fibrosis Liver Disease (CFLD PUSH) study was a prospective longitudinal study that aimed to deter. . .
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. . .