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Individual

An Individual entry documents a human participant (or the source patient behind a derived model) from whom biospecimens were collected for MC2 Center-supported research. Individual metadata captures demographic information, diagnosis and staging at the individual level, and longitudinal clinical outcomes such as treatment history, recurrence, and vital status.

This model outlines the key attributes needed to describe an individual independent of any single specimen or assay, so that clinical context collected once can be linked across every biospecimen, model, and dataset derived from that individual.

Why You Should Contribute Individual Entries

Contributing individual entries ensures that clinical and demographic context is recorded once and consistently reused across every biospecimen and downstream dataset tied to that person, rather than being duplicated or left out of assay-level metadata. This supports accurate cohort analysis, reduces re-collection of the same clinical details, and helps ensure patient privacy is respected through consistent de-identified identifiers.

Sharing human-derived data responsibly

If you are planning to share human-derived data, verify that you have satisfied any institutional review policies.

Before uploading data to Synapse, be sure that the information is de-identified and anonymized. If this is not possible, you have any concerns, or are unsure if a file or type of metadata is suitable to share, ask the MC2 Center!

Who Should Be Contributing Individual Entries?

  1. Clinical Research Coordinators – Ensure demographic and diagnosis information is accurately captured at enrollment.
  2. Data Managers – Maintain the individual-level record that biospecimen and model entries key off of.
  3. Principal Investigators (PIs) – Ensure longitudinal outcomes (treatment response, recurrence, vital status) are kept up to date as a study progresses.
  4. Biobank Coordinators – Link individuals to the biospecimens collected from them.

Download Template

You can download the Individual entry template, which includes all required fields, to streamline the data entry process.

Full Field Reference

Below is the full field reference table with attributes and their descriptions.

Attribute Description Required Column Type Format Regex Pattern Standard Terms Examples
Individual_id Unique row identifier, used as a primary key for record updates. This should follow the GrantNumber-INDxxx convention unless otherwise indicated. True string None ^CA\d{6}-IND\d{1,9}$ None
Study Key The unique Study_id foreign keys associated with the resource, found in the grant Study information. Used to group the resource with other components. Please provide multiple values as a comma-separated list. False string None None None
Individual dbGaP Subject Id The identifer assigned to the participant by dbGap False string None None None
Individual Sex Biological sex associated with the specimen donor True string None None View
Individual Gender Text designations that identify gender. Gender is described as the assemblage of properties that distinguish people on the basis of their societal roles. Identification of gender is based upon self-report and may come from a form, questionnaire, interview, etc. False string None None View
Individual Age at Diagnosis Age at the time the individual was diagnosed, expressed in years. False number None None None
Individual Disease Type The type of tumor associated with the specimen. Multiple values permitted, comma separated. False string_list None None View
Individual Primary Diagnosis Text term used to describe the patient's histologic diagnosis, as described by the World Health Organization's (WHO) International Classification of Diseases for Oncology (ICD-O). True string None None View
Individual Primary Site Primary site in the body associated with the primary diagnosis. False string None None View
Individual Primary Tumor Stage Extent of the primary cancer based on evidence obtained from clinical assessment parameters determined prior to treatment. False string None None View
Individual Site of Origin The text term used to describe the anatomic site of origin, of the patient's malignant disease. False string None None View
Individual Tumor Subtype The subtype related to the scientific determination and investigation, analysis and recognition of the presence and nature of disease, condition, or injury from expressed signs and symptoms of tissue growth resulting from uncontrolled cell proliferation. False string None None None
Individual Tumor Grade Numeric value to express the degree of abnormality of cancer cells, a measure of differentiation and aggressiveness. False string None None View
Individual Tumor Lymph Node Stage Extent of the regional lymph node involvement for the cancer based on evidence obtained from clinical assessment parameters determined prior to treatment. False string None None View
Individual Known Metastasis Sites The text term(s) used to describe the anatomic site(s) of metastasis associated with the patient's malignant disease. False string_list None None View
Individual Metastasis Stage Extent of the distant metastasis for the cancer based on evidence obtained from clinical assessment parameters determined prior to treatment. False string None None View
Individual Treatment Type Text term that describes the kind of treatment administered. False string None None View
Individual Therapeutic Agent Text identification of the individual agent(s) used as part of a treatment regimen. False string None None View
Individual Days to Treatment Number of days between the date used for index and the date the treatment started. False number None None None
Individual Treatment Response Text term that describes the patient's final outcome after the treatment was administered. False string None None View
Individual Days to Last Followup Number of days between the dates used for index and last follow-up False number None None None
Individual Recurrence Status Yes/No/Unknown indicator to identify whether a patient has had a new tumor event after initial treatment. False string None None View
Individual Days To Recurrence Number of days between the date used for index and the date the patient's disease recurred False number None None None
Individual Days to Last Known Disease Status Time interval from the date of last follow up to the date of initial pathologic diagnosis, represented as a calculated number of days. False number None None None
Individual Last Known Disease Status Text term that describes the last known status of an individual. False string None None View
Individual Vital Status Text term that describes the patient's current vital status. False string None None View