Clinical Metadata Template

VEOIBD Clinical Metadata Template

Attribute	Description	Required	Valid Values
age_at_diagnosis	age at diagnosis in years	FALSE
autoimmune	autoimmune diagonsis	FALSE	no, yes, unknown
breastfed	history of breast feeding	FALSE	no, yes, unknown
consanguinity	history of consagunity	FALSE	no, yes, unknown
disease_activity_behavior	disease activity behavior	FALSE	never_severe, ever_severe, nonstricturing_nonpenetrating, stricturing, penetrating, penetrating_and_stricturing, unknown
disease_activity_location	disease activity location	FALSE	L1, L2, L3, L4, E1, E2, E3, E4
ethnicity	ethnicity	FALSE	hispanic, not_hispanic, unknown
external_share	Per ICF, data can be shared externally with scientific research community	FALSE	no, yes, unknown
extraintestinal_manifestations	history of extra intestinal manifestations	FALSE	no, yes, unknown
family_id	family identifier	TRUE
gi_phenotype	GI phenotype	TRUE	CD, UC, IBDU, CTL, other
gi_surgeries	GI surguries	FALSE	no, yes, unknown
growth_delay	growth delay	FALSE	no, yes, unknown
ibd_history	family history of ibd	FALSE	no, yes, unknown
immunodeficiency	immunodeficiency diagnosis	FALSE	no, yes, unknown
individual_id	A unique identifier for every enrolled individual, formatted as `'site''local_id'_'participant_id'`, e.g., BCH00001_0	TRUE
jewish_origin	jewish ancestry	FALSE	no, yes, unknown
local_id	local identifier (max of 5 digits)	TRUE
participant_id	Integer code indicating the participant identity or familial relation to proband. 0 = proband; 1 = control; 2 = mother; 3 = father, ≥ 4 = sibling/secondary family	TRUE	0, 1, 2, 3, 4, 5, 6, 7, 8, 9
participant_role	participant role	TRUE	ibd, non_ibd, mother, father, sibling, second_degree
perianal_involvement	perianal involvment	FALSE	no, yes, unknown
project	project identifier	TRUE	RC2, munich, other, unknown
race	race	FALSE	white, black, asian, native_american, pacific_islander, unknown
sex	biological sex	TRUE	male, female
site	site identifier indicating which institute oversaw the enrollment and sample collection of the patient.	TRUE	BCH, LMU, HSC, OXF, MSSM
upper_disease_type	upper disease type	FALSE	L4A, L4B