Matches in SemOpenAlex for { <https://semopenalex.org/work/W4225569560> ?p ?o ?g. }
- W4225569560 abstract "Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways.This pilot study aimed to explore the best approach for developing national RD care pathways in the Irish healthcare system in the context of a lack of agreed methodology. Irish clinical specialists and patient/lived experience experts were asked to map existing practice against evidence-based clinical practice guidelines (CPGs) and best practice recommendations from the European Reference Networks (ERNs) to develop optimal care pathways. The study focused on the more prevalent, multisystemic rare conditions that require multidisciplinary care, services, supports and therapeutic interventions.29 rare conditions were selected across 18 ERNs, for care pathway development. Multidisciplinary input from multiple specialisms was relevant for all pathways. A high level of engagement was experienced from clinical leads and patient organisations. CPGs were identified for 26 of the conditions. Nurse specialist, Psychology, Medical Social Work and Database Manager roles were deemed essential for all care pathways. Access to the therapeutic Health Service Professionals: Physiotherapy, Occupational Therapy, and Speech and Language Therapy were seen as key requirements for holistic care. Genetic counselling was highlighted as a core discipline in 27 pathways demonstrating the importance of access to Clinical Genetics services for many people with RDs.This study proposes a methodology for Irish RD care pathway development, in collaboration with patient/service user advocates. Common RD patient needs and health care professional interventions across all pathways were identified. Key RD stakeholders have endorsed this national care pathway initiative. Future research focused on the implementation of such care pathways is a priority." @default.
- W4225569560 created "2022-05-05" @default.
- W4225569560 creator A5003369871 @default.
- W4225569560 creator A5004204730 @default.
- W4225569560 creator A5022764571 @default.
- W4225569560 creator A5027809312 @default.
- W4225569560 creator A5028603190 @default.
- W4225569560 creator A5030609927 @default.
- W4225569560 creator A5036724956 @default.
- W4225569560 creator A5044447165 @default.
- W4225569560 creator A5045320492 @default.
- W4225569560 creator A5048877132 @default.
- W4225569560 creator A5056565188 @default.
- W4225569560 creator A5059110295 @default.
- W4225569560 creator A5060907782 @default.
- W4225569560 creator A5067594922 @default.
- W4225569560 creator A5070027778 @default.
- W4225569560 creator A5071099326 @default.
- W4225569560 creator A5082143264 @default.
- W4225569560 date "2022-04-11" @default.
- W4225569560 modified "2023-10-10" @default.
- W4225569560 title "Designing rare disease care pathways in the Republic of Ireland: a co-operative model" @default.
- W4225569560 cites W2024632887 @default.
- W4225569560 cites W2054519031 @default.
- W4225569560 cites W2069310265 @default.
- W4225569560 cites W2125734713 @default.
- W4225569560 cites W2137890915 @default.
- W4225569560 cites W2286778172 @default.
- W4225569560 cites W2577502906 @default.
- W4225569560 cites W2602183338 @default.
- W4225569560 cites W2743415974 @default.
- W4225569560 cites W2750740529 @default.
- W4225569560 cites W2771998459 @default.
- W4225569560 cites W2920079190 @default.
- W4225569560 cites W2947718371 @default.
- W4225569560 cites W2949179047 @default.
- W4225569560 cites W2973267506 @default.
- W4225569560 cites W2993030096 @default.
- W4225569560 cites W3000053204 @default.
- W4225569560 cites W3003422849 @default.
- W4225569560 cites W3016796714 @default.
- W4225569560 cites W3034486770 @default.
- W4225569560 cites W3095448533 @default.
- W4225569560 cites W3096570499 @default.
- W4225569560 cites W3106119290 @default.
- W4225569560 cites W3107310158 @default.
- W4225569560 cites W3107941938 @default.
- W4225569560 cites W3112407540 @default.
- W4225569560 cites W3113653703 @default.
- W4225569560 cites W3118909473 @default.
- W4225569560 cites W3126912689 @default.
- W4225569560 cites W3134097909 @default.
- W4225569560 cites W3138412198 @default.
- W4225569560 cites W3155059039 @default.
- W4225569560 cites W3164448535 @default.
- W4225569560 cites W3188737004 @default.
- W4225569560 doi "https://doi.org/10.1186/s13023-022-02309-6" @default.
- W4225569560 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/35410222" @default.
- W4225569560 hasPublicationYear "2022" @default.
- W4225569560 type Work @default.
- W4225569560 citedByCount "3" @default.
- W4225569560 countsByYear W42255695602023 @default.
- W4225569560 crossrefType "journal-article" @default.
- W4225569560 hasAuthorship W4225569560A5003369871 @default.
- W4225569560 hasAuthorship W4225569560A5004204730 @default.
- W4225569560 hasAuthorship W4225569560A5022764571 @default.
- W4225569560 hasAuthorship W4225569560A5027809312 @default.
- W4225569560 hasAuthorship W4225569560A5028603190 @default.
- W4225569560 hasAuthorship W4225569560A5030609927 @default.
- W4225569560 hasAuthorship W4225569560A5036724956 @default.
- W4225569560 hasAuthorship W4225569560A5044447165 @default.
- W4225569560 hasAuthorship W4225569560A5045320492 @default.
- W4225569560 hasAuthorship W4225569560A5048877132 @default.
- W4225569560 hasAuthorship W4225569560A5056565188 @default.
- W4225569560 hasAuthorship W4225569560A5059110295 @default.
- W4225569560 hasAuthorship W4225569560A5060907782 @default.
- W4225569560 hasAuthorship W4225569560A5067594922 @default.
- W4225569560 hasAuthorship W4225569560A5070027778 @default.
- W4225569560 hasAuthorship W4225569560A5071099326 @default.
- W4225569560 hasAuthorship W4225569560A5082143264 @default.
- W4225569560 hasBestOaLocation W42255695601 @default.
- W4225569560 hasConcept C138885662 @default.
- W4225569560 hasConcept C144024400 @default.
- W4225569560 hasConcept C151730666 @default.
- W4225569560 hasConcept C159110408 @default.
- W4225569560 hasConcept C160735492 @default.
- W4225569560 hasConcept C162324750 @default.
- W4225569560 hasConcept C16920402 @default.
- W4225569560 hasConcept C184356942 @default.
- W4225569560 hasConcept C187736073 @default.
- W4225569560 hasConcept C22467394 @default.
- W4225569560 hasConcept C27415008 @default.
- W4225569560 hasConcept C2778373050 @default.
- W4225569560 hasConcept C2779343474 @default.
- W4225569560 hasConcept C2779541514 @default.
- W4225569560 hasConcept C2780623531 @default.
- W4225569560 hasConcept C36289849 @default.
- W4225569560 hasConcept C41895202 @default.
- W4225569560 hasConcept C50522688 @default.
- W4225569560 hasConcept C71924100 @default.