Matches in SemOpenAlex for { <https://semopenalex.org/work/W3154409884> ?p ?o ?g. }
- W3154409884 endingPage "1633" @default.
- W3154409884 startingPage "1625" @default.
- W3154409884 abstract "Abstract Neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis (SWN) are rare conditions with pronounced variability of clinical expression. We aimed to reach consensus on the most important manifestations meriting the development of drug trials. The five-staged modified Delphi procedure consisted of two questionnaires and a consensus meeting for 40 NF experts, a survey for 63 patient representatives, and a final workshop. In the questionnaires, manifestations were scored on multiple items on a 4-point Likert scale. The highest average scores for NF experts deciding the ‘need for new treatment’ were for malignant peripheral nerve sheath tumour (MPNST) (4,0) and high grade glioma (HGG) (3,9) for NF1; meningioma (3,9) for NF2 and pain (3,9) for SWN. The patient representatives assigned high scores to all manifestations, with plexiform neurofibroma being highest in NF1 (4,0), vestibular schwannoma in NF2 (4,0), and pain in SWN (3,9). Twelve experts participated in the consensus meeting and prioritised manifestations. MPNST was ranked the highest for NF1, followed by benign peripheral nerve sheath tumours. Tumour manifestations received highest ranking in NF2, and pain was the most prominent problem for SWN. Patient representative ratings for NF1 were similar to the experts’ opinions, except that they ranked HGG as the most important manifestation. For NF2 and SWN, the patient representatives agreed with the experts. We conclude that NF experts and patient representatives consent to prioritise development of drug trials for MPNST, benign peripheral nerve sheath tumours, cutaneous manifestations and HGG for NF1; tumours for NF2; and pain for SWN." @default.
- W3154409884 created "2021-04-26" @default.
- W3154409884 creator A5011492949 @default.
- W3154409884 creator A5013617741 @default.
- W3154409884 creator A5017717228 @default.
- W3154409884 creator A5029037831 @default.
- W3154409884 creator A5029519240 @default.
- W3154409884 creator A5035396358 @default.
- W3154409884 creator A5050629531 @default.
- W3154409884 creator A5057078532 @default.
- W3154409884 creator A5059797681 @default.
- W3154409884 creator A5086942088 @default.
- W3154409884 creator A5087003938 @default.
- W3154409884 date "2021-04-26" @default.
- W3154409884 modified "2023-10-16" @default.
- W3154409884 title "Identifying challenges in neurofibromatosis: a modified Delphi procedure" @default.
- W3154409884 cites W109706361 @default.
- W3154409884 cites W171436837 @default.
- W3154409884 cites W1963611449 @default.
- W3154409884 cites W1974290681 @default.
- W3154409884 cites W1976469530 @default.
- W3154409884 cites W2004721099 @default.
- W3154409884 cites W2036044314 @default.
- W3154409884 cites W2103594288 @default.
- W3154409884 cites W2105248638 @default.
- W3154409884 cites W2108052450 @default.
- W3154409884 cites W2139510281 @default.
- W3154409884 cites W2169163382 @default.
- W3154409884 cites W2267930101 @default.
- W3154409884 cites W2291991964 @default.
- W3154409884 cites W2474484771 @default.
- W3154409884 cites W2550279928 @default.
- W3154409884 cites W2733328613 @default.
- W3154409884 cites W2750817355 @default.
- W3154409884 cites W2765855474 @default.
- W3154409884 cites W2783428706 @default.
- W3154409884 cites W2900602403 @default.
- W3154409884 cites W3139553455 @default.
- W3154409884 cites W4248578796 @default.
- W3154409884 cites W792928115 @default.
- W3154409884 doi "https://doi.org/10.1038/s41431-021-00892-z" @default.
- W3154409884 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/8071842" @default.
- W3154409884 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/33903738" @default.
- W3154409884 hasPublicationYear "2021" @default.
- W3154409884 type Work @default.
- W3154409884 sameAs 3154409884 @default.
- W3154409884 citedByCount "5" @default.
- W3154409884 countsByYear W31544098842021 @default.
- W3154409884 countsByYear W31544098842022 @default.
- W3154409884 countsByYear W31544098842023 @default.
- W3154409884 crossrefType "journal-article" @default.
- W3154409884 hasAuthorship W3154409884A5011492949 @default.
- W3154409884 hasAuthorship W3154409884A5013617741 @default.
- W3154409884 hasAuthorship W3154409884A5017717228 @default.
- W3154409884 hasAuthorship W3154409884A5029037831 @default.
- W3154409884 hasAuthorship W3154409884A5029519240 @default.
- W3154409884 hasAuthorship W3154409884A5035396358 @default.
- W3154409884 hasAuthorship W3154409884A5050629531 @default.
- W3154409884 hasAuthorship W3154409884A5057078532 @default.
- W3154409884 hasAuthorship W3154409884A5059797681 @default.
- W3154409884 hasAuthorship W3154409884A5086942088 @default.
- W3154409884 hasAuthorship W3154409884A5087003938 @default.
- W3154409884 hasBestOaLocation W31544098841 @default.
- W3154409884 hasConcept C105795698 @default.
- W3154409884 hasConcept C126322002 @default.
- W3154409884 hasConcept C141071460 @default.
- W3154409884 hasConcept C142724271 @default.
- W3154409884 hasConcept C143998085 @default.
- W3154409884 hasConcept C2778173781 @default.
- W3154409884 hasConcept C2778679214 @default.
- W3154409884 hasConcept C2778984943 @default.
- W3154409884 hasConcept C2781447767 @default.
- W3154409884 hasConcept C2909023644 @default.
- W3154409884 hasConcept C33923547 @default.
- W3154409884 hasConcept C60641444 @default.
- W3154409884 hasConcept C71924100 @default.
- W3154409884 hasConceptScore W3154409884C105795698 @default.
- W3154409884 hasConceptScore W3154409884C126322002 @default.
- W3154409884 hasConceptScore W3154409884C141071460 @default.
- W3154409884 hasConceptScore W3154409884C142724271 @default.
- W3154409884 hasConceptScore W3154409884C143998085 @default.
- W3154409884 hasConceptScore W3154409884C2778173781 @default.
- W3154409884 hasConceptScore W3154409884C2778679214 @default.
- W3154409884 hasConceptScore W3154409884C2778984943 @default.
- W3154409884 hasConceptScore W3154409884C2781447767 @default.
- W3154409884 hasConceptScore W3154409884C2909023644 @default.
- W3154409884 hasConceptScore W3154409884C33923547 @default.
- W3154409884 hasConceptScore W3154409884C60641444 @default.
- W3154409884 hasConceptScore W3154409884C71924100 @default.
- W3154409884 hasFunder F4320326631 @default.
- W3154409884 hasIssue "11" @default.
- W3154409884 hasLocation W31544098841 @default.
- W3154409884 hasLocation W31544098842 @default.
- W3154409884 hasLocation W31544098843 @default.
- W3154409884 hasLocation W31544098844 @default.
- W3154409884 hasLocation W31544098845 @default.
- W3154409884 hasLocation W31544098846 @default.
- W3154409884 hasLocation W31544098847 @default.