NCPI FHIR Implementation Guide v2 - Local Development build (v0.1.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions

Research Study Example Cbtn

The following example resources represent the elements required for representing the research study, Children’s Brain Tumor Network in FHIR.

TODO: Write a detailed explanation of how each of these resources fit together under the examples menu option (which doesn’t currently exist…). Until I have time for that, this list should be comprehensive.

CHOP Organization

• Children’s Hospital of Philadelphia

Kids First Research Study Collections

• Research Collection X01s
• Research Collection PBTA

CBTN Research Study

• Research Study Children’s Brain Tumor Network

Access Policies

CBTN GRU data access access via DAC

• Consent GRU via DAC
• Participant Group consented under GRU via DAC
• Participant Research Subject consented under GRU via DAC

CBTN GRU data access via dbGaP

• Consent GRU via dbGaP
• Participant Group consented under GRU via dbGaP
• Participant Research Subject consented under GRU via dbGaP

CBTN Genomic Summary Results (GSR) Allowed Access

• Consent GSR Allowed
• Participant Group consented under GSR Allowed
• Participant Research Subject consented under GSR Allowed

CBTN Registered Tier Access

• Consent Registered Access
• Participant Group consented under Registered Access
• Participant Research Subject consented under Registered Access

Miscellaneous Resources

• Research Study Role dbGaP PI, X01
• Research Study Role dbGaP PI
• Research Study Role Operations Lead