Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey

Timely diagnosis is one of the most serious challenges faced by people living with a rare disease (PLWRD), and this study estimates that in Europe, the average total diagnosis time (TDT) is close to 5 years. We investigated the duration of the TDT for PLWRD in Europe, the difficulties associated wit...

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Bibliographic Details
Published in:	European journal of human genetics : EJHG Vol. 32; no. 9; pp. 1116 - 1126
Main Authors:	Faye, Fatoumata, Crocione, Claudia, Anido de Peña, Roberta, Bellagambi, Simona, Escati Peñaloza, Luciana, Hunter, Amy, Jensen, Lene, Oosterwijk, Cor, Schoeters, Eva, de Vicente, Daniel, Faivre, Laurence, Wilbur, Michael, Le Cam, Yann, Dubief, Jessie
Format:	Journal Article
Language:	English
Published:	England Nature Publishing Group 01.09.2024
Subjects:	Adolescent Adult Aged Child Child, Preschool Children Delayed Diagnosis - statistics & numerical data Diagnosis DNA nucleotidylexotransferase Europe - epidemiology Female Genetic disorders Humans Infant Male Middle Aged Rare diseases Rare Diseases - diagnosis Rare Diseases - epidemiology Rare Diseases - genetics Retrospective Studies Surveys Surveys and Questionnaires Europe
ISSN:	1018-4813, 1476-5438, 1476-5438
Online Access:	Get full text
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