epidermolysis bullosa: a group of inherited connective tissue diseases that cause blisters in the skin and mucosal membranes, with an incidence of 20 per million newborns in the United States.It is a result of a defect in anchoring between the epidermis and dermis, resulting in friction and skin fragility. Its severity ranges from mild to lethal.
In this example the number of individuals is 2, since only 2 unique individuals (FG1 and FG2) have EXAMPLE_ENDPOINT events.
Number of individuals
8
-
-
?
Unadjusted prevalence
Using example data:
ID
phenocode
age
FG1
EXAMPLE_ENDPOINT
45
FG1
ENDPOINT_XYZ
46
FG1
DEATH
47
FG2
EXAMPLE_ENDPOINT
30
FG2
EXAMPLE_ENDPOINT
30.1
FG3
ENDPOINT_XYZ
50
In this example the unadjusted prevalence is 66 %.
The unadjusted prevalence is the number of individuals having an endpoint divided by the total number of individuals.
Here:
2 unique individuals (FG1 and FG2) have EXAMPLE_ENDPOINT events
1 individual (FG3) has no EXAMPLE_ENDPOINT event
So the unadjusted prevalence is 2 / 3 = 66 %.
Unadjusted prevalence (%)
0.0
-
-
?
Mean age at first event
Using example data:
ID
phenocode
age
FG1
EXAMPLE_ENDPOINT
45
FG1
ENDPOINT_XYZ
46
FG1
DEATH
47
FG2
EXAMPLE_ENDPOINT
30
FG2
EXAMPLE_ENDPOINT
30.1
FG3
ENDPOINT_XYZ
50
In this example the mean age at first event is 37.5.
The mean age at first event for EXAMPLE_ENDPOINT is computed by:
selecting individuals having EXAMPLE_ENDPOINT: FG1 and FG2
for these individuals, taking the age of their first event of EXAMPLE_ENDPOINT: 45 for FG1 and 30 for FG2
computing the mean of these values
So the mean age at first event is Mean(45, 30) = 37.5.
Mean age at first event (years)
34.78
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-
?
Case fatality at 5 years
Using example data:
ID
phenocode
age
FG1
EXAMPLE_ENDPOINT
45
FG1
ENDPOINT_XYZ
46
FG1
DEATH
47
FG2
EXAMPLE_ENDPOINT
30
FG2
EXAMPLE_ENDPOINT
30.1
FG3
ENDPOINT_XYZ
50
In this example the case fatality at 5 years is 50%.
The case fatality at 5 years is computed by:
selecting individuals with EXAMPLE_ENDPOINT events: FG1 and FG2.
for each of them, checking if they have a DEATH event: FG1 has this event.
checking the number of individuals for which 5 years or less happened between the first event of EXAMPLE_ENDPOINT and the DEATH event: only 1 (FG1, with 47 - 25 = 2 years between said events).
Here only 1 individual has less than 5 years between EXAMPLE_ENDPOINT and DEATH, and 2 individuals have EXAMPLE_ENDPOINT. The case fatality at 5 years is 1 / 2 = 50 %.
Case fatality at 5-years (%)
0.0
-
-
Longitudinal metrics
Sex
All
Female
Male
?
Median number of events per individual
Using example data:
ID
phenocode
age
FG1
EXAMPLE_ENDPOINT
45
FG1
ENDPOINT_XYZ
46
FG1
DEATH
47
FG2
EXAMPLE_ENDPOINT
30
FG2
EXAMPLE_ENDPOINT
30.1
FG3
ENDPOINT_XYZ
50
In this example the median number of events is 1.5.
The median number of events is computed by:
selecting individuals with EXAMPLE_ENDPOINT: FG1, FG2
counting the number of EXAMPLE_ENDPOINT events for each of these individuals:
1 event for FG1
2 events for FG2
computing the median of these values.
Here the median number of events per individual is Median(1, 2) = 1.5.
Median nb. of events per indiv.
1
-
-
?
Recurrence within 6 months
Using example data:
ID
phenocode
age
FG1
EXAMPLE_ENDPOINT
45
FG1
ENDPOINT_XYZ
46
FG1
DEATH
47
FG2
EXAMPLE_ENDPOINT
30
FG2
EXAMPLE_ENDPOINT
30.1
FG3
ENDPOINT_XYZ
50
In this example the recurrence within 6 months is 50 %.
The recurrence within 6 months is computed by:
selecting individuals with EXAMPLE_ENDPOINT: FG1, FG2, so 2 individuals in total.
for each of them, checking if they have 2 events of EXAMPLE_ENDPOINT less than 6 months apart:
FG1 has only 1 event of EXAMPLE_ENDPOINT so FG1 is discarded.
FG2 has 2 events of EXAMPLE_ENDPOINT less than 6 months apart (one at age 30 and the other at age 30.1).
counting the number of individuals with events less than 6 months apart: 1 in this case (FG2)
Here the recurrence within 6 months is 1 / 2 = 50 %.