Table 1 National Birth Defects Prevention Network (NBDPN) levels of data quality performance measures for completeness, timeliness, and accuracy
NBDPN Data Quality (DQ) Performance Measures | Level 1 | Level 2 | Level 3 | |
|---|---|---|---|---|
Completeness | DQ1.1 Types of data sources used systematically and routinely to identify potential cases at a population-based level | Each of the following sources: | The data sources in level 1 and any additional sources of natal or postnatal data | The data sources in levels 1 and 2, as well as routine reporting from any of the following data sources b for systematic specialized ascertainment of prenatally diagnosed defects. |
• Vital record data | ||||
• Additional source for case identification | ||||
DQ1.2 Birth defects included using standard NBDPN case definitions a | All of the NBDPN “core” birth defects | All of the NBDPN “recommended” birth defects | Major structural malformations beyond those birth defects identified on the NBDPN list | |
DQ1.3 Pregnancy outcomes included | Live births | Live births, stillbirths | Live births, stillbirths, and other pregnancy loss | |
DQ1.4 Systematic and routine identification of cases (age of diagnosis) during ascertainment period | Identification of cases diagnosed through 1 month of age | Identification of cases diagnosed through 1 year of age | Identification of cases diagnosed beyond 1 year of age | |
DQ1.5 Data elements collected a | All “core” data elements | All “recommended” data elements | All “enhanced” data elements | |
Timeliness | DQ2.1 Time of case data completion for NBDPN “core” list | ≥75 % of all “core” NBDPN birth defects - reported cases complete within 2 years of delivery. | ≥95 % of all “core” NBDPN birth defects - reported cases complete within 2 years of delivery. | ≥99 % of all “core” NBDPN birth defects - reported cases complete within 2 years of delivery. |
DQ2.2 Time of case data completion for NBDPN “recommended” list | ≥75 % of all “recommended” NBDPN birth defects list-reported cases complete within 2 years of delivery. | ≥95 % of all “recommended” NBDPN birth defects list-reported cases complete within 2 years of delivery. | ≥99 % of a “recommended” NBDPN birth defects list-reported cases complete within 2 years of delivery. | |
Accuracy | DQ3.1 Data quality procedures for verification of case diagnosis | Minimal data quality procedure for case verification, majority of cases accepted as reported | Verification using “some” method, e.g., clinical case report from a specialty clinic, agreement across multiple data sources, agreement between procedure and diagnostic codes, laboratory reports | Verification using method beyond level 2, e.g., medical records |
DQ3.2 Scope of birth defects verified | Special projects, selected diagnoses, or samples only | Verification for all “core” birth defects | Verification for all “recommended” birth defects | |
DQ3.3 Level of expertise for individuals who perform case diagnosis verification | Staff with no or minimal disease coding or clinical expertise perform routine case reviews | Staff with expertise in disease coding or clinical training perform routine case reviews | Clinical geneticist, dysmorphologist or other high level expert depending on defect routinely performs case reviews | |
DQ3.4 Database quality assurance process | Quality checks are performed for “core” NBDPN data elements. | Quality checks are performed for “recommended” NBDPN data elements. | Quality checks are performed for “enhanced” NBDPN data elements. | |