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Featured News
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 Data Science and Meet the Expert Webinar Series
Starting in January, 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
Check out the NIDDK-CR Webinar Series page for information on the webinars in the series and how to join.
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
Data Science Fundamentals Webinar, on January 30, 2025, from 2-4 PM EST | 01/30/2025
The Data Science and Meet the Expert Webinar Series hosted by NIDDK-CR aims to accelerate data science and AI-driven biomedical research by fostering collaboration between biomedical researchers and experts in the field. The first webinar in this series titled “Data Science Fundamentals” on Thursday, January 30, 2025, from 2-4 PM EST will feature presentations by experts in data science at the Naval Information Warfare Systems Command (NAVWAR) 4.0 Data Science Learning Program. This session is geared towards all researchers wanting a deeper understanding of the data science process and techniques within each step, such as supervised, unsupervised learning techniques, deep learning, and specialized data science topics (including computer vision, natural language processing, and time series). Register here: https://nih.zoomgov.com/webinar/register/WN_1bHWwk36RQmBa3VgG7M7Bw
Updates to R4R Resources
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. . .
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 . . .
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 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). The primary objectiv. . .
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 analysis datasets. If you have already been approved to receive the TN10 data package, please contact us through your request to download the updated data package. TN10 was a phase 2 prevention trial of TrialNet, studying the effect of teplizumab on insulin production in the relatives of type 1 dia. . .
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 includes an additional vitamin deficiency analysis dataset, and two analysis datasets using combined data from the Prospective Database of Infants with Cholestasis (PROBE) and START studies. If you have already been approved to receive the START data package, please contact us through your request to d. . .
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 receive the FORCE data package, please contact us through your request to download the updated data package. The FibroScan in Pediatric Cholestatic Liver Disease (FORCE) study, a natural history study within ChiLDReN, was a cross-sectional and longitudinal assessment of the utility of liver stiffness . . .
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), has been posted to the NIDDK Central Repository. Data from this study are now available for request. The IMAGINE-II study was a multicenter, extension study of LUM001 in children diagnosed with Alagille syndrome (ALGS) who had completed participation in a core LUM001 treatment protocol (ITCH st. . .
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 from this study are now available for request. The PRIME study was a multicenter prospective phase I/IIa open label trial, aimed at assessing the feasibility, tolerability, and safety of intravenous immunoglobulin (IVIG) therapy following hepatic portoenterostomy (HPE) in infants with biliary atr. . .
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 available for request. The Nonalcoholic Steatohepatitis Clinical Research Network (NASH CRN) was initiated in 2002 to conduct multicenter, collaborative studies on the etiology, contributing factors, natural history, complications, and treatment of NASH. The Nonalcoholic Fatty Liver Disease Pediatric Dat. . .
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. If you have already been approved to receive the Teen-LABS, please contact us through your request to download the updated data package. Teen-LABS conducted coordinated clinical, epidemiological, and behavioral research focused on adolescent bariatric surgery. The study developed common clinical p. . .
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 available for request. The Immune Regulation and Costimulation in Natural History of Chronic Hepatitis B (HBRN Immunology Cohort) study aimed to assess whether the balance between immune regulatory and effector responses in HBV-infected individuals defines the level of viremia, liver inflammation, and. . .
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 from this study are now available for request. Immune Regulation and Costimulation in Natural History and Therapeutic Outcome of Chronic Hepatitis B (HBRN Immunology Treatment) study sought to examine the effects of antiviral therapy in host immune phenotype and to investigate if antiviral immune r. . .