CDEs
Forms
Days of age from birth primary or subspecialist first notified about abnormal NBS screen
Reason for first newborn screen
Newborn hearing screen performed
Patient status at time of NBS reporting to specialty center
Condition enzyme assay
Type of genetic/genomic testing
Gene(s) associated with Condition
Gene: Specify allele 1
Gene: Specify allele 2
Mother: Allele 1
Mother: Allele 2
Date of last outpatient speciality visit
Patient consent valid
Location of visit
Patient has moved to a new residence since the last visit
Patient has enrolled in a research study since the last visit
Medical coverage at visit
Patient has new biological sibling since last visit
Reason immunization status not up to date
Current comorbidities
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32