2019
DOI: 10.57187/smw.2019.20004
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The Swiss Primary Ciliary Dyskinesia registry: objectives, methods and first results

Abstract: Primary ciliary dyskinesia (PCD) is a rare, hereditary, multiorgan disease caused by defects in the structure and function of motile cilia. It results in a wide range of clinical manifestations, most commonly in the upper and lower airways. Central data collection in national and international registries is essential to studying the epidemiology of rare diseases and filling in gaps in knowledge of diseases such as PCD. For this reason, the Swiss Primary Ciliary Dyskinesia Registry (CH-PCD) was founded in 2013 … Show more

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Cited by 14 publications
(11 citation statements)
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“…After deduplication, there were 3484 unique abstracts that were reviewed and 34 were identified for full text review. Of those, 8 met the inclusion and exclusion criteria and were included in the scoping review [Figure 1] [5,15,[22][23][24][25][26][27].…”
Section: Resultsmentioning
confidence: 99%
“…After deduplication, there were 3484 unique abstracts that were reviewed and 34 were identified for full text review. Of those, 8 met the inclusion and exclusion criteria and were included in the scoping review [Figure 1] [5,15,[22][23][24][25][26][27].…”
Section: Resultsmentioning
confidence: 99%
“…Another strength was the representative study population and the high response rate. Since the study was nested in the national CH-PCD registry, it allowed for an unselected population of people with PCD, including children and adults [19].…”
Section: Discussionmentioning
confidence: 99%
“…Our study was a cross-sectional questionnaire survey nested in the Swiss PCD registry (CH-PCD) [19]. CH-PCD is a patient registry (www.clinicaltrials.gov, identifier NCT03606200) that collects demographic characteristics, diagnostic test results, clinical data and information about management of patients in Switzerland.…”
Section: Study Design and Study Populationmentioning
confidence: 99%
“…Our national cross-sectional questionnaire survey was nested in the Swiss PCD registry (CH-PCD). CH-PCD is a population-based patient registry (www.clinicaltrials.gov; identifier NCT03606200) enrolling all people with confirmed or clinical diagnoses of primary ciliary dyskinesia in Switzerland [19]. Patients with a clinical primary ciliary dyskinesia diagnosis have a strong clinical suspicion, such as situs anomalies, persistent cough, persistent rhinitis, chronic or recurrent upper or lower respiratory infections and history of neonatal respiratory symptoms as term infants, but have not completed the diagnostic algorithm and have negative or ambiguous results for the tests performed so far [19][20][21].…”
Section: Study Design and Populationmentioning
confidence: 99%
“…Our study has several limitations. Although we invited all people enrolled in CH-PCD, selection bias is possible because primary ciliary dyskinesia in Switzerland is underdiagnosed [19]. The COVID-19 pandemic could have affected physical activity.…”
Section: Original Articlementioning
confidence: 99%