Human Cancer Models Initiative's cancer type-specific CRFs have been developed through collaborations with international clinical experts and the clinical data elements have been standardized through the Cancer Data Standards Registry and Repository (caDSR). Enrollment and Follow-up CRFs are available below for download. The Enrollment CRF data are collected at the patient index date, which includes initial pathologic diagnosis, sample procurement, or first patient visit. The Follow-up CRF data are collected at least 3 months after enrollment data collection following model establishment.As the tumor types modeled through the HCMI are constantly updated, be sure to check back regularly for additional or updated CRFs. Note: In some cases, it is possible to collect tissues from different tumor sites (e.g. primary, metastatic, and/or recurrent) from the same patient for model development. New CRFs capture information about multiple models developed from the same patient within a single form. The multiple model CRFs are designated with "-multi" within the file name. Versioning is used if there are any subsequent edits to the CRFs.
Case Report Forms (CRFs)
HCMI Searchable Catalog
HCMI Searchable Catalog is a continuously updated resource for querying the available next-generation models developed by HCMI. Within the Catalog, users can search by patient demographics, tumor, and model elements including age at diagnosis, sex, treatment information, clinical tumor diagnosis, primary site, clinical stage, and type of model (e.g. 3D-organoid, 2D-conditionally reprogrammed cells), etc. For additional assistance in navigating the Searchable Catalog, please see the “HCMI Searchable Catalog User Guide”.
HCMI Searchable Catalog User Guide
This guide provides users with a resource to effectively navigate the HCMI Searchable Catalog.
Genomic Data Commons (GDC)
NCI's Genomic Data Commons (GDC) is a unified data sharing platform that allows users to search, browse, download, and analyze data. The GDC serves as a single knowledge base which unifies genomic and clinical data from different research programs for the cancer research community.
CDE (Common Data Element) Browser User Guide
Informed Consent Template for Tissue Accrual to Enable Model Development and Distribution
Successful Standard Operating Procedures (SOPs)
Standard Operating Procedures (SOPs) are written instructions for doing a specific task in a certain way (Source: NCI). The purpose of an SOP is to guide a novice to carry out a particular task in an accurate and consistent manner.
Open versus Controlled-Access Data
OCG employs stringent human subjects’ protection and data access policies to protect the privacy and confidentiality of the research participants. Depending on the risk of patient identification, OCG programs data are available to the scientific community in two tiers: open or controlled-access. Both types of data can be accessed through its corresponding OCG program-specific data matrix or portal.
Data within this category presents minimal risk of participant identification. Much of OCG program data, excluding patient identifiers, are open-access. OCG provides the scientific community the maximum amount of open-access data allowable under HIPAA guidelines. Access to these data does not require user certification, and researchers may explore data content without restriction.
Data within this category present a higher risk of patient identification. While stripped of direct patient identifiers as defined by HIPAA, controlled-access data contain specific demographic, clinical, and genotypic information that are excluded in open-access data. Controlled-access data are unique and valuable to research projects for which open-access data are insufficient. Access to protected data requires user certification which can be obtained through NCBI’s dbGaP (National Center for Biotechnology Information’s database of Genotypes and Phenotypes).
To learn more and understand which data each OCG program provides, visit How to Access Multiple Datasets.