FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W4307168712> ?p ?o ?g. }

• W4307168712 abstract "Abstract Background People with rare disorders face significant global health inequalities; the challenge is how to raise awareness and develop a nucleus of experts in a country who are then able to provide guidance to others in that country. The International Prader–Willi Syndrome Organisation (IPWSO) established Project ECHO ® with the aim of facilitating the sharing of knowledge and the building of international partnerships to reduce global health inequalities for a particular rare genetically-determined neurodevelopmental disorder, Prader–Willi Syndrome (PWS). Four different ECHO programmes were established for the following groups: (a) Individuals (usually parents) who had taken on a leadership role in their country; (b) health professionals interested in PWS; (c) professional care providers supporting children and adults with PWS; and (d) a Latin American ECHO in Spanish. The programme started in 2020 and an evaluation was undertaken after one year to determine: the extent to which IPWSO had been able to recruit and retain individuals globally; the nature and extent of any benefits gained from the sessions; and examples of how individual involvement in the programme had led to local benefits. The methods included analysing routinely kept process indicators and survey data from the attendees of one component of the programme (the Leadership ECHO), together with a qualitative analysis of survey data and recorded interviews of attendees from countries of differing socio-economic status. Results We describe the IPWSO ECHO programme and report on the outcomes from the evaluation of one aspect of the programme, the Leadership ECHO. Attendance of the Leadership ECHO sessions was satisfactory, with a mean of 24.7 participants, with participants attending a mean of 5.67 sessions, i.e., 30% of sessions. There was also good global reach, with individuals attending from 34 countries, although there were notable geographic regions with very limited representation. Feedback and interviews demonstrated the positive impact of the programme with some early evidence of positive developments at national level. Conclusions Families and professionals from countries with a range of expertise and services offered to people with PWS remained engaged throughout the ECHO programme, established networks of support and fostered the development of good practice." @default.
• W4307168712 created "2022-10-29" @default.
• W4307168712 creator A5027927334 @default.
• W4307168712 creator A5035475197 @default.
• W4307168712 creator A5064096655 @default.
• W4307168712 creator A5073049390 @default.
• W4307168712 creator A5079563177 @default.
• W4307168712 creator A5082892905 @default.
• W4307168712 date "2022-10-21" @default.
• W4307168712 modified "2023-09-25" @default.
• W4307168712 title "Reducing global health inequalities for a rare disorder: evaluating the international Prader–Willi Syndrome Organisation’s Echo® programme" @default.
• W4307168712 cites W1980782305 @default.
• W4307168712 cites W2170956924 @default.
• W4307168712 cites W2484274124 @default.
• W4307168712 cites W2743245152 @default.
• W4307168712 cites W2744672018 @default.
• W4307168712 cites W2978727243 @default.
• W4307168712 cites W2995500161 @default.
• W4307168712 cites W3204093614 @default.
• W4307168712 doi "https://doi.org/10.1186/s13023-022-02504-5" @default.
• W4307168712 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/36271403" @default.
• W4307168712 hasPublicationYear "2022" @default.
• W4307168712 type Work @default.
• W4307168712 citedByCount "0" @default.
• W4307168712 crossrefType "journal-article" @default.
• W4307168712 hasAuthorship W4307168712A5027927334 @default.
• W4307168712 hasAuthorship W4307168712A5035475197 @default.
• W4307168712 hasAuthorship W4307168712A5064096655 @default.
• W4307168712 hasAuthorship W4307168712A5073049390 @default.
• W4307168712 hasAuthorship W4307168712A5079563177 @default.
• W4307168712 hasAuthorship W4307168712A5082892905 @default.
• W4307168712 hasBestOaLocation W43071687121 @default.
• W4307168712 hasConcept C134306372 @default.
• W4307168712 hasConcept C138816342 @default.
• W4307168712 hasConcept C15744967 @default.
• W4307168712 hasConcept C159110408 @default.
• W4307168712 hasConcept C160735492 @default.
• W4307168712 hasConcept C17744445 @default.
• W4307168712 hasConcept C199539241 @default.
• W4307168712 hasConcept C2778173179 @default.
• W4307168712 hasConcept C33923547 @default.
• W4307168712 hasConcept C45555294 @default.
• W4307168712 hasConcept C46578552 @default.
• W4307168712 hasConcept C509550671 @default.
• W4307168712 hasConcept C71924100 @default.
• W4307168712 hasConceptScore W4307168712C134306372 @default.
• W4307168712 hasConceptScore W4307168712C138816342 @default.
• W4307168712 hasConceptScore W4307168712C15744967 @default.
• W4307168712 hasConceptScore W4307168712C159110408 @default.
• W4307168712 hasConceptScore W4307168712C160735492 @default.
• W4307168712 hasConceptScore W4307168712C17744445 @default.
• W4307168712 hasConceptScore W4307168712C199539241 @default.
• W4307168712 hasConceptScore W4307168712C2778173179 @default.
• W4307168712 hasConceptScore W4307168712C33923547 @default.
• W4307168712 hasConceptScore W4307168712C45555294 @default.
• W4307168712 hasConceptScore W4307168712C46578552 @default.
• W4307168712 hasConceptScore W4307168712C509550671 @default.
• W4307168712 hasConceptScore W4307168712C71924100 @default.
• W4307168712 hasIssue "1" @default.
• W4307168712 hasLocation W43071687121 @default.
• W4307168712 hasLocation W43071687122 @default.
• W4307168712 hasLocation W43071687123 @default.
• W4307168712 hasLocation W43071687124 @default.
• W4307168712 hasLocation W43071687125 @default.
• W4307168712 hasOpenAccess W4307168712 @default.
• W4307168712 hasPrimaryLocation W43071687121 @default.
• W4307168712 hasRelatedWork W1597167924 @default.
• W4307168712 hasRelatedWork W2014521712 @default.
• W4307168712 hasRelatedWork W2103780472 @default.
• W4307168712 hasRelatedWork W2748952813 @default.
• W4307168712 hasRelatedWork W2761418369 @default.
• W4307168712 hasRelatedWork W2899084033 @default.
• W4307168712 hasRelatedWork W3134372141 @default.
• W4307168712 hasRelatedWork W4290791580 @default.
• W4307168712 hasRelatedWork W4366602921 @default.
• W4307168712 hasRelatedWork W4386327196 @default.
• W4307168712 hasVolume "17" @default.
• W4307168712 isParatext "false" @default.
• W4307168712 isRetracted "false" @default.
• W4307168712 workType "article" @default.