Cohort profile: life with neurofibromatosis 1 - the Danish NF1 cohort.

ABSTRACT:

Purpose

The Danish neurofibromatosis 1 (NF1) cohort was initiated to study health-related, socioeconomic and psychological consequences of living with the monogenetic disorder NF1 using a nationwide and population-based approach.

Participants

The cohort includes all 2467 individuals in Denmark who were hospitalised with or due to NF1 from 1977 to 2013 or registered in the RAREDIS Database (1995-2013), a national clinical database for rare diseases, or both. A comparison cohort matched to individuals with NF1 on sex and date of birth was identified in the Civil Registration System (n=20 132).

Findings to date

All cohort members were linked to the unique Danish registries to obtain information on hospital contacts, birth outcomes, education and partnership. A questionna

SUBMITTER: Doser K 

PROVIDER: S-EPMC9490603 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature