FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W3215163550> ?p ?o ?g. }

• W3215163550 abstract "<b>Background:</b> Service delivery models vary between and within countries, yet the extent and determinants of different approaches to deliver care for patients with primary ciliary dyskinesia (PCD) in the last 12 years have not been assessed. This is particularly important in rare diseases due to geographical barriers and need for specialised equipment and personnel. <b>Methods:</b> We used a mixed-methods approach. We conducted interviews with PCD experts between 2016-2018. Transcripts were coded using thematic analysis. Based on themes identified from the interviews, we developed a survey to quantify similarities and differences between models. This was circulated to healthcare professionals involved in care for PCD patients in 2019. Results were compared to a similar survey conducted in 2009. <b>Results:</b> Fifteen PCD experts were interviewed and 56 experts from 31 countries completed the survey (88% response rate). Availability of diagnostic testing has increased in the last ten years. All centres had either transmission electron microscopy or genetic testing available, the two confirmatory tests according to ERS diagnostic guidelines. However, geographical region and size of PCD centres influenced choice of management strategy, with larger centres prioritising effective and less expensive therapies such as airway clearance, nasal rinsing and hypertonic saline. Prophylactic antibiotics were often prescribed in large centres (69% vs 38% in small centres). <b>Conclusions:</b> The variability of management strategies highlight the need for evidence-based management guidelines for PCD. Our findings can inform the establishment of new centres, improve service in existing centres, and set a wider agenda for rare diseases." @default.
• W3215163550 created "2021-12-06" @default.
• W3215163550 creator A5002534679 @default.
• W3215163550 creator A5007238756 @default.
• W3215163550 creator A5011149125 @default.
• W3215163550 creator A5011791214 @default.
• W3215163550 creator A5015020297 @default.
• W3215163550 creator A5015759708 @default.
• W3215163550 creator A5022660669 @default.
• W3215163550 creator A5024567040 @default.
• W3215163550 creator A5024672035 @default.
• W3215163550 creator A5037259223 @default.
• W3215163550 creator A5039424104 @default.
• W3215163550 creator A5041442452 @default.
• W3215163550 creator A5045256321 @default.
• W3215163550 creator A5051072958 @default.
• W3215163550 creator A5051402710 @default.
• W3215163550 creator A5061031105 @default.
• W3215163550 creator A5067390798 @default.
• W3215163550 creator A5070089045 @default.
• W3215163550 creator A5079092007 @default.
• W3215163550 creator A5082377804 @default.
• W3215163550 creator A5089251053 @default.
• W3215163550 date "2021-09-05" @default.
• W3215163550 modified "2023-09-27" @default.
• W3215163550 title "Service delivery models for primary ciliary dyskinesia, an international comparison" @default.
• W3215163550 doi "https://doi.org/10.1183/13993003.congress-2021.pa3461" @default.
• W3215163550 hasPublicationYear "2021" @default.
• W3215163550 type Work @default.
• W3215163550 sameAs 3215163550 @default.
• W3215163550 citedByCount "0" @default.
• W3215163550 crossrefType "proceedings-article" @default.
• W3215163550 hasAuthorship W3215163550A5002534679 @default.
• W3215163550 hasAuthorship W3215163550A5007238756 @default.
• W3215163550 hasAuthorship W3215163550A5011149125 @default.
• W3215163550 hasAuthorship W3215163550A5011791214 @default.
• W3215163550 hasAuthorship W3215163550A5015020297 @default.
• W3215163550 hasAuthorship W3215163550A5015759708 @default.
• W3215163550 hasAuthorship W3215163550A5022660669 @default.
• W3215163550 hasAuthorship W3215163550A5024567040 @default.
• W3215163550 hasAuthorship W3215163550A5024672035 @default.
• W3215163550 hasAuthorship W3215163550A5037259223 @default.
• W3215163550 hasAuthorship W3215163550A5039424104 @default.
• W3215163550 hasAuthorship W3215163550A5041442452 @default.
• W3215163550 hasAuthorship W3215163550A5045256321 @default.
• W3215163550 hasAuthorship W3215163550A5051072958 @default.
• W3215163550 hasAuthorship W3215163550A5051402710 @default.
• W3215163550 hasAuthorship W3215163550A5061031105 @default.
• W3215163550 hasAuthorship W3215163550A5067390798 @default.
• W3215163550 hasAuthorship W3215163550A5070089045 @default.
• W3215163550 hasAuthorship W3215163550A5079092007 @default.
• W3215163550 hasAuthorship W3215163550A5082377804 @default.
• W3215163550 hasAuthorship W3215163550A5089251053 @default.
• W3215163550 hasConcept C126322002 @default.
• W3215163550 hasConcept C136264566 @default.
• W3215163550 hasConcept C144024400 @default.
• W3215163550 hasConcept C160735492 @default.
• W3215163550 hasConcept C162324750 @default.
• W3215163550 hasConcept C190248442 @default.
• W3215163550 hasConcept C2777714996 @default.
• W3215163550 hasConcept C2778206077 @default.
• W3215163550 hasConcept C2779379686 @default.
• W3215163550 hasConcept C2780378061 @default.
• W3215163550 hasConcept C2984752397 @default.
• W3215163550 hasConcept C36289849 @default.
• W3215163550 hasConcept C50522688 @default.
• W3215163550 hasConcept C512399662 @default.
• W3215163550 hasConcept C68595000 @default.
• W3215163550 hasConcept C71924100 @default.
• W3215163550 hasConcept C74196892 @default.
• W3215163550 hasConceptScore W3215163550C126322002 @default.
• W3215163550 hasConceptScore W3215163550C136264566 @default.
• W3215163550 hasConceptScore W3215163550C144024400 @default.
• W3215163550 hasConceptScore W3215163550C160735492 @default.
• W3215163550 hasConceptScore W3215163550C162324750 @default.
• W3215163550 hasConceptScore W3215163550C190248442 @default.
• W3215163550 hasConceptScore W3215163550C2777714996 @default.
• W3215163550 hasConceptScore W3215163550C2778206077 @default.
• W3215163550 hasConceptScore W3215163550C2779379686 @default.
• W3215163550 hasConceptScore W3215163550C2780378061 @default.
• W3215163550 hasConceptScore W3215163550C2984752397 @default.
• W3215163550 hasConceptScore W3215163550C36289849 @default.
• W3215163550 hasConceptScore W3215163550C50522688 @default.
• W3215163550 hasConceptScore W3215163550C512399662 @default.
• W3215163550 hasConceptScore W3215163550C68595000 @default.
• W3215163550 hasConceptScore W3215163550C71924100 @default.
• W3215163550 hasConceptScore W3215163550C74196892 @default.
• W3215163550 hasLocation W32151635501 @default.
• W3215163550 hasOpenAccess W3215163550 @default.
• W3215163550 hasPrimaryLocation W32151635501 @default.
• W3215163550 hasRelatedWork W1526821830 @default.
• W3215163550 hasRelatedWork W2307997317 @default.
• W3215163550 hasRelatedWork W2388220225 @default.
• W3215163550 hasRelatedWork W2479242699 @default.
• W3215163550 hasRelatedWork W2903552034 @default.
• W3215163550 hasRelatedWork W3210119427 @default.
• W3215163550 hasRelatedWork W4283204976 @default.
• W3215163550 hasRelatedWork W4291960588 @default.
• W3215163550 hasRelatedWork W4309365539 @default.
• W3215163550 hasRelatedWork W4366729489 @default.

• next