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Characteristics of cohorts in the Childhood Cancer Research Group

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Characteristics of cohorts in the Childhood Cancer Research Group at the Danish Cancer Society’s Research Center

Cohort name (acronym) NF1 (Neurofibromatosis type 1)

Main focus areas Health and psychosocial consequences of living with NF1 Source of identification of

study population

National Patient Registry and a clinical database of rare diseases

Study population 2,420 individuals from Denmark who have been hospitalized with NF1

636 individuals identified in the clinical database In total, 2,515 individuals with NF1

Design and data collection

Study design Cohort study

Setting Population-based

Data sources (yes/no)

Registers Yes

Medical records No

Questionnaires Yes

Interviews No

Physical examinations No Bio samples (if yes, specify) No

Other tests Neuropsychological assessments Website and/or contact

person

Jeanette Falck Winther, jeanette@cancer.dk

Referencer

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