NCPI FHIR Implementation Guide - Local Development build (v0.2.0). See the Directory of published versions

Finding a Research Study

Finding a Research Study with data of interest

In order for researchers to get access to the data that suits their research objectives, they must first know which data is out there. The NCPI Profiles are designed to make this task much easier when those responsible for loading research data into FHIR follow the recommended approaches.

Study Metadata on Unrestricted Servers

By hosting studies’ well formed metadata on a FHIR server with no access restrictions in place, researchers will be able to identify research studies of interest with minimal effort.

Resource that can be hosted on unrestricted servers, even for restricted data include:

• NCPI Research Study
• NCPI Study Group

NCPI Research Study Condition

Linking the study’s condition to appropriate terms from a public ontology, such as Human Phenotype Ontology, MONDO allows simple queries to return all studies known to contain data about the disease of interest.

NCPI Study Group Count

Providing an accurate quantity allows for researchers to know the size of studies that may suit their needs.