Addressing Gaps, Challenges, and Opportunities Related to Data and Metadata Standards for NIDDK Research Priorities

Purpose

To promote data interoperability for both primary and secondary use by establishing standards for data, metadata, standardized terminologies, and common data elements (CDEs). This will be achieved by organizing a two-day virtual workshop with key stakeholders from industry, academia, regulatory bodies, and other sectors to identify and address gaps, challenges, and opportunities in data and metadata standards relevant to NIDDK's research mission.

Objectives

For data types particularly relevant to NIDDK research mission areas:

1. Facilitate meaningful discussions with community partners on promoting data interoperability for both primary and secondary use in NIDDK research mission areas.
2. Identify gaps and challenges resulting from lack of or inconsistent use of existing data/metadata standards.
3. Explore opportunities to develop standards, standardized terminologies, or CDEs where data/metadata standards do not exist.
4. Identify next steps to encourage the development or adoption of data and metadata standards for relevant data types.

Background

Community-adopted data and metadata standards are crucial for effective data sharing and integration across various domains. Data standards and ontologies for clinical and laboratory observations enable integration of clinical results for improved care and clinical research. However, disease specific measures in clinical studies are often varied in data collections, data specifications, and data representations, which create challenges for integrated secondary data analyses. To address these challenges, NIDDK is organizing a workshop aimed at identifying gaps, challenges, and opportunities related to data and metadata standards for data types relevant to NIDDK research mission areas.

We are bringing together experts from industry, academia, regulatory bodies, and other fields who specialize in research related to diabetes, obesity, nutrition, liver, digestive and kidney diseases. While the initial focus will be on data and metadata from Continuous Glucose Monitors (CGM), other wearable devices, DEXA scans, diet and nutrition, physical activity, urodynamic testing, and related measures (such as fatty liver and kidney disease), the discussion will also explore additional topics as the panel sees fit. The primary goal is to identify and address the current gaps, challenges, and opportunities in these areas.

Planning and Organizing Committee Chairs

Ashley Xia, M.D., Ph.D.
Division of Diabetes, Endocrinology, and Metabolic Diseases
NIDDK
ashley.xia@nih.gov

Daniel Gossett, Ph.D.
Division of Kidney, Urologic, and Hematologic Diseases
NIDDK
daniel.gossett@nih.gov

Veerasamy Ravichandran, Ph.D.
Division of Digestive Diseases and Nutrition
NIDDK
veerasamy.ravichandra@nih.gov

Registration Deadline

March 25, 2025