December Data Sharing and Reuse Seminar

Friday, December 11, 2026

Jeffrey Driban, Ph.D., Peter Maye Ph.D., and Noël Burtt Ph.D. will present "NIAMS Fireside Chat: Unlocking Musculoskeletal Data to Drive Discovery" from 12:00 p.m.–1:00 p.m. EDT.

About the Speakers

Jeffrey Driban is a Professor in the Department of Population and Quantitative Health Sciences at UMass Chan Medical School. Dr. Driban is the Director of the Osteoarthritis Initiative Collaborative Osteoarthritis Research Enterprise (OAI CORE) Knowledgebase, a central hub for navigating and understanding the Osteoarthritis Initiative (OAI) study methods and its publicly available data sets. For over 15 years, his OAI-based research has explored novel risk factors and measures to facilitate more efficient clinical trials and a better understanding of osteoarthritis and its potential subtypes.

Peter Maye is an Associate Professor at the University of Connecticut Health School of Dental Medicine, in the Center for Regenerative Medicine and Skeletal Development. He directs development of the Rodent Open Science Skeletal Archive (ROSSA) and has a strong interest in skeletal phenotyping and spatial biology. He received his PhD in Biology from Wesleyan University and completed postdoctoral research under Dianqing Wu and David Rowe at the University of Connecticut Health.

Noël Burtt is Senior Director for the Knowledge Portals Network at the Broad Institute. A human geneticist by training, her research focuses on the design and development of open-access, integrated scientific resources for sharing data and knowledge with the wider research community. She serves as Principal Investigator for the PanKbase program. She also serves as Principal Investigator for the Common Fund Data Ecosystem Knowledge Center and for the Systems Biology of Inflammation Data Portal. Finally, she leads a set of genetics and genomics data and software platforms, including the NHGRI funded, Association to Function Knowledge Portal, and the Accelerating Medicines Partnership for Common Metabolic Diseases Knowledge Portal.

About the Seminar Series

The seminar is open to the public and registration is required each month. Individuals who need interpreting services and/or other reasonable accommodations to participate in this event should contact Allison Hurst at 301-670-4990. Requests should be made at least five days in advance of the event. 

The National Institutes of Health (NIH) Office of Data Science Strategy hosts this seminar series to highlight examples of data sharing and reuse on the second Friday of each month at noon ET. The monthly series highlights researchers who have taken existing data and found clever ways to reuse the data or generate new findings. A different NIH institute or center will also share its data science activities each month.

November Data Sharing and Reuse Seminar

Friday, November 13, 2026

Carl Kesselman, Ph.D., and Dr. Robert Schuler, Ph.D. will present "Building AI-Ready Scientific Data Ecosystems: From FAIR Principles to Intelligent Agent Integration" from 12:00 p.m.–1:00 p.m. EDT.

About the Seminar

AI-ready science is constrained less by model sophistication than by the shortage of high-quality, well-described data and by infrastructure that cannot keep pace with evolving methods. Drawing on experiences with FaceBase and the Deriva platform across craniofacial, hearing, and ophthalmology research, we argue that FAIR data largely subsumes "AI-ready" data, and that sustainable repositories follow SCALE principles: Self-service curation, domain-Agnostic platforms, Lightweight models, and Evolvable systems.

As large language model agents become the layer through which researchers interact with data, a further question arises: what makes a repository agent-ready? We propose three architectural requirements—documented service interfaces with full coverage, FAIR metadata annotated with community ontologies, and an introspectable data model with an LLM-aligned query interface—and show how an agent built on them can mediate the full research lifecycle, from discovery through citable dataset assembly to curation of results back into the repository, capturing experimental context that artifact-level reproducibility alone cannot.

About the Speakers

Carl Kesselman is the William M. Keck Professor of Engineering at the University of Southern California, with appointments in the Daniel J. Epstein Department of Industrial and Systems Engineering, the Thomas Lord Department of Computer Science, the Keck School of Medicine, and the Herman Ostrow School of Dentistry. He is Director of the Informatics Systems Research Division at the USC Information Sciences Institute and is internationally recognized as one of the pioneers of Grid Computing and distributed cyberinfrastructure. His research has spanned distributed systems, scientific cyberinfrastructure, data integration, security, and large-scale collaborative science platforms. More recently, his work has focused on data-centric socio-technical ecosystems, AI-enabled scientific infrastructure, and agent-mediated systems that support long-running human-machine scientific interactions. Kesselman is a Fellow of the ACM, IEEE, and the British Computer Society. His honors include the British Computer Society's Lovelace Medal, the IEEE Internet Award, and the IEEE Computer Society's Goode Memorial Award, and the ACM High Performance Computing Achievement Award by HPDC.  He was also named one of the 35 Legends of High Performance Computing by HPC Wire Magazine in 2025.

Dr. Robert Schuler is a Lead Scientist at the USC Information Sciences Institute (ISI). He is the technical lead for the FaceBase Consortium, the NIH-funded data hub for craniofacial, dental, inner ear, and broader biomedical research, supported by NIDCR, NIDCD, and ODSS. His research interests span sociotechnical approaches to empowering scientists with data-centric research methods, building communities of practice around shared data resources, reproducible machine learning, and AI agents as collaborators in the scientific process. Before FaceBase, he served on the leadership team of the Biomedical Informatics Research Network (NIH/NCRR) and led the development and deployment of large-scale research data grids, including multi-site collaborative functional neuroimaging and veterinary pathology for the national primate research centers. Earlier, he held senior research engineering roles in the Globus Project, helping to build the shared, globally distributed computing infrastructure that supported high-energy physics, gravitational-wave astronomy, and climate science.

About the Seminar Series

The seminar is open to the public and registration is required each month. Individuals who need interpreting services and/or other reasonable accommodations to participate in this event should contact Allison Hurst at 301-670-4990. Requests should be made at least five days in advance of the event. 

The National Institutes of Health (NIH) Office of Data Science Strategy hosts this seminar series to highlight examples of data sharing and reuse on the second Friday of each month at noon ET. The monthly series highlights researchers who have taken existing data and found clever ways to reuse the data or generate new findings. A different NIH institute or center will also share its data science activities each month.

Strengthening Trust and Leadership: Reflections on National Institutes of Health (NIH) 2026 Community Days: Securing NIH Controlled-Access Data and Our Data Protection Journey

Wednesday, September 2, 2026

By: Maureen Falvella, NIH CIO

On April 13 and 14, I had the privilege of leading the National Institutes of Health (NIH) 2026 Community Days: Securing NIH Controlled-Access Data webinars to engage directly with our stakeholders, researchers, and the broader public about the critical work we’re undertaking to protect controlled-access data. These sessions were designed to foster transparency around our security and operational standards, update the community on new resources and requirements, and reinforce our shared responsibility in safeguarding participant trust. I am deeply grateful for the vibrant participation and thoughtful questions that were raised, which underscores the importance and urgency of our mission.

Protecting participants’ trust requires one standard: secure, consistent protections for NIH controlled-access data—whether it is processed within a NIH Controlled-Access Data Repository (CADR) or a research institution’s IT systems. This principle drove the Extramural Community Days agenda, where we discussed not only what needs to be done, but why rigorous data protection is more essential than ever. Our commitment goes beyond compliance; it’s about honoring the trust participants place in us and ensuring the integrity of scientific research that impacts lives.

The risks facing Americans’ health and genomic data are not theoretical—they are real, documented, and evolving. Adversaries seek to leverage diverse datasets for economic gain, surveillance, and even military advantage. We’ve seen threat actors link wearable data (like smartwatches), health records, and geographical information to identify military movements and compromising information on global leaders. Alarmingly, we’re witnessing a 300% increase in data breaches within the healthcare sector and a 37% rise in ransomware attacks.i Most research institutions haven't been required until recently to follow specific security standards, making them softer targets than hospitals or government agencies. The threat surface expands daily, and adversarial AI accelerates these risks, exponentially increasing the possibility of re-identification of deidentified health information.

In response, NIH has been building a framework to address exactly these threats through robust data protection standards. The Community Days webinars provided a comprehensive overview of security and data access standards for researchers using NIH controlled-access repositories. We highlighted the NIST Special Publication 800-171 series—a foundational resource that institutions can leverage to comply with NIH Security Best Practices. Additionally, we discussed how NIH Is strengthening identity proofing using modern technologies such as NIH Research Auth Service (RAS), Login.gov, and ID.me.

NIH’s data protection journey did not begin overnight. This has been a multi-year effort that began in 2022, marked by continuous improvement and collaboration. Early on, we focused on securing human-derived genomic datasets regardless of if the data was processed in a NIH controlled-access data repository or within a researcher’s IT systems. In February 2024, Executive Order 14117 provided a pivotal directive to safeguard Americans’ bulk sensitive personal data, setting clear expectations for federal agencies—including NIH—to tighten controls and mitigate emerging risks. Building on this momentum, the Department of Justice finalized a rule in January 2025 that restricts certain data transactions, especially those involving countries identified as posing security concerns.

NIH has taken direct action to support these federal mandates by issuing key guide notices. In April 2025, NOT-OD-25-160 formally prohibited countries of concern from accessing NIH controlled-access data, reinforcing our protective stance. Then, in September 2025, NOT-OD-25-159 established unified security and operational standards for all NIH controlled-access data repositories, ensuring every user and institution operates under the same rigorous requirements. Each of these steps represents our commitment to evolving alongside the threat landscape and to upholding the federal standards designed to protect participant trust and the integrity of biomedical research. These Extramural Community Days mark another milestone in our ongoing process, reflecting both our progress and our unwavering commitment to securing the data entrusted to us.

Diligence is a daily practice at NIH. We continuously monitor threats, conduct regular audits, and partner with external experts to keep our defenses strong. This vigilance is our commitment to participants and the scientific community—one we uphold through action and accountability.

As we move forward, I want to reassure the community that NIH will remain at the forefront of data protection. We welcome your engagement, feedback, and partnership as we collectively uphold the highest standards of security, transparency, and scientific excellence. Together, we can protect participant trust, advance groundbreaking research, and maintain U.S. leadership in biomedical science.

View the Community Days recordings. (Scroll down to Resources)

i Verizon 2020 Data Breach Incident Report