CENTER FOR CLINICAL OBSERVATIONAL INVESTIGATIONS
Large clinical datasets are an essential resource for biomedical research as they can provide data on millions of patients, which allows for greater strength and reliability in studies. The valuable data found within these existing real-world, large-scale clinical datasets may reduce the need for some traditional intentional trials. However, accessing large clinical datasets can be challenging due to associated costs, license restrictions, and other barriers.
To address these challenges, the National Library of Medicine launched a new Center for Clinical Observational Investigations in 2023. Initially, NLM will curate a list of nationally and internationally available clinical datasets. Then, by using informatics, data science, and statistical analysis, NLM will create and make dataset profiles available to include key information such as participant counts, demographics, diseases, and other characteristics important to research. The Center will also aim to employ a consistent approach to organize the data to foster standardization across the datasets and reduce ambiguity, improve reliability of research, and lower barriers to the use of data.
Dataset Profiles are one method CCOI uses to reduce barriers to accessing large-scale clinical datasets. Dataset Profiles highlight, summarize and aggregate information about and within a dataset. Each profile provides key details to help researchers to understand the information provided in a dataset.
Each Dataset Profile includes:
Provides general information about datasets including source information, features, descriptions, and other key details.
Provides basic metrics of the dataset including overall population counts and counts by year, gender, etc.
Provides counts by individual concepts such as conditions, procedures, etc.
Last updated Jan 13, 2025