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Original Research

Validity of first-time diagnoses of congenital epidermolysis bullosa in the Danish National Patient Registry and the Danish Pathology Registry

, , , , &
Pages 115-124 | Published online: 17 Jan 2019

Figures & data

Table 1 Criteria used for validating diagnoses of congenital epidermolysis bullosa

Figure 1 Flowchart illustrating the validation process of the CEB diagnoses.

Abbreviation: CEB, congenital epidermolysis bullosa.
Figure 1 Flowchart illustrating the validation process of the CEB diagnoses.

Table 2 Demographics and distribution of the total study population, the validation sample, and missing records

Table 3 PPV for the coding of epidermolysis bullosa in the DNPR and the DPR

Table 4 Results for PPV for probable and confirmed ICD-10 epidermolysis bullosa diagnoses stratified by department type, sex, age at diagnosis, calendar year, diagnosis type, and patient type

Table S1 List of specific clinical symptoms and findings related to and indicating specific subtype of congenital epidermolysis bullosa

Table S2 Proportion of patients identified by ICD-10 codes who had medical records available for validation, overall, and by hospital and calendar period of diagnosis

Table S3 Comparison of characteristics of nonmissing records and missing records for those from the validations sample, ICD-10 diagnoses only

Table S4 Demographic characteristics between validated population from Aarhus and Bispebjerg Dermatological Departments and the distribution of the diagnosis code systems (ICD-8, ICD-10, and SNOMED), sex, and median age at diagnosis

Table S5 Demographic and descriptive parameters of the ICD-10 coded populations of the two specialized dermatological departments

Table S6 Comparing the PPV of the two dermatological departments in the presented subgroups

Table S7 Distribution of specific ICD-10 EB diagnoses classified as probable against the new ICD-10 diagnosis based on validation including the PPV for each