Description

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Data type

text

Alias

UMLS CUI [1]

C1269815

Description

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Data type

text

Alias

UMLS CUI [1,1]

C0439564

UMLS CUI [1,2]

C1442488

Description

As there is an official distribution site, the actual 7 questions of this questionnaire are not part in this version of the standard set. The ICHOM OIDs are: PROMIS-PPGH7_Q01 to PROMIS-PPGH7_Q07. Supporting definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer

Data type

integer

Alias

UMLS CUI [1,1]

C0600420

UMLS CUI [1,2]

C3693645

UMLS CUI [1,3]

C0030755

UMLS CUI [1,4]

C2964552