Matches in SemOpenAlex for { <https://semopenalex.org/work/W4220703964> ?p ?o ?g. }
Showing items 1 to 85 of
85
with 100 items per page.
- W4220703964 abstract "The Primary Immunodeficiencies (PIDs) principles of care were published in 2014 as the gold standard for care of patients with PIDs, setting a common goal for stakeholders to ensure that patients with PID have access to appropriate care and good quality of life. Since then, IPOPI (the International Patient Organisation for Primary Immunodeficiencies), has been working with national PID patient organisations as well as collaborating with scientific and medical institutions and experts to bring these principles closer to the day-to-day life of individuals with PIDs.The six PID Principles of Care were revised to consider advances in the field, as well as political developments that had occurred after their initial publication in 2014. Based on this revision the list was updated, and a new principle was added. The six established principles were: diagnosis, treatment, universal health coverage, specialised centres, national patient organisations and registries. Each principle was structured and measured through a series of criteria, and was given the same weight, as they have been considered to all be equally important. Specific weights were attributed to the criteria depending on their relevance and importance to quantify the principle. The index was translated into a survey for data collection: initially involving data from selected countries for a pilot, followed by integration of data from IPOPI's national member organisations and key countries.The PID Life Index was developed in 2020 to assess the status of the PID environment and the implementation of the 6 principles worldwide. The Index allows for benchmarking countries either according to a set of principles and criteria or based on the user's preferences. This can be displayed in an interactive map or through a data visualisation system.The PID Life Index has been developed successfully and has potential to become an important source of information for PID stakeholders, to increase awareness and information as well as support advocacy initiatives on PIDs nationally, regionally or globally." @default.
- W4220703964 created "2022-04-03" @default.
- W4220703964 creator A5012092018 @default.
- W4220703964 creator A5013223158 @default.
- W4220703964 creator A5021781599 @default.
- W4220703964 creator A5046939778 @default.
- W4220703964 creator A5049412099 @default.
- W4220703964 creator A5053464960 @default.
- W4220703964 creator A5058861543 @default.
- W4220703964 creator A5077220786 @default.
- W4220703964 creator A5085552277 @default.
- W4220703964 date "2022-01-08" @default.
- W4220703964 modified "2023-10-18" @default.
- W4220703964 title "The PID Life Index: an interactive tool to measure the status of the PID healthcare environment in any given country" @default.
- W4220703964 cites W2049881704 @default.
- W4220703964 cites W2125520756 @default.
- W4220703964 cites W3005664566 @default.
- W4220703964 cites W3133339554 @default.
- W4220703964 doi "https://doi.org/10.1186/s13023-021-02161-0" @default.
- W4220703964 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/34998414" @default.
- W4220703964 hasPublicationYear "2022" @default.
- W4220703964 type Work @default.
- W4220703964 citedByCount "3" @default.
- W4220703964 countsByYear W42207039642023 @default.
- W4220703964 crossrefType "journal-article" @default.
- W4220703964 hasAuthorship W4220703964A5012092018 @default.
- W4220703964 hasAuthorship W4220703964A5013223158 @default.
- W4220703964 hasAuthorship W4220703964A5021781599 @default.
- W4220703964 hasAuthorship W4220703964A5046939778 @default.
- W4220703964 hasAuthorship W4220703964A5049412099 @default.
- W4220703964 hasAuthorship W4220703964A5053464960 @default.
- W4220703964 hasAuthorship W4220703964A5058861543 @default.
- W4220703964 hasAuthorship W4220703964A5077220786 @default.
- W4220703964 hasAuthorship W4220703964A5085552277 @default.
- W4220703964 hasBestOaLocation W42207039641 @default.
- W4220703964 hasConcept C127413603 @default.
- W4220703964 hasConcept C133731056 @default.
- W4220703964 hasConcept C136764020 @default.
- W4220703964 hasConcept C144133560 @default.
- W4220703964 hasConcept C160735492 @default.
- W4220703964 hasConcept C162853370 @default.
- W4220703964 hasConcept C17744445 @default.
- W4220703964 hasConcept C199539241 @default.
- W4220703964 hasConcept C2777382242 @default.
- W4220703964 hasConcept C41008148 @default.
- W4220703964 hasConcept C47116090 @default.
- W4220703964 hasConcept C536315585 @default.
- W4220703964 hasConcept C71924100 @default.
- W4220703964 hasConcept C86251818 @default.
- W4220703964 hasConceptScore W4220703964C127413603 @default.
- W4220703964 hasConceptScore W4220703964C133731056 @default.
- W4220703964 hasConceptScore W4220703964C136764020 @default.
- W4220703964 hasConceptScore W4220703964C144133560 @default.
- W4220703964 hasConceptScore W4220703964C160735492 @default.
- W4220703964 hasConceptScore W4220703964C162853370 @default.
- W4220703964 hasConceptScore W4220703964C17744445 @default.
- W4220703964 hasConceptScore W4220703964C199539241 @default.
- W4220703964 hasConceptScore W4220703964C2777382242 @default.
- W4220703964 hasConceptScore W4220703964C41008148 @default.
- W4220703964 hasConceptScore W4220703964C47116090 @default.
- W4220703964 hasConceptScore W4220703964C536315585 @default.
- W4220703964 hasConceptScore W4220703964C71924100 @default.
- W4220703964 hasConceptScore W4220703964C86251818 @default.
- W4220703964 hasIssue "1" @default.
- W4220703964 hasLocation W42207039641 @default.
- W4220703964 hasLocation W42207039642 @default.
- W4220703964 hasLocation W42207039643 @default.
- W4220703964 hasLocation W42207039644 @default.
- W4220703964 hasLocation W42207039645 @default.
- W4220703964 hasOpenAccess W4220703964 @default.
- W4220703964 hasPrimaryLocation W42207039641 @default.
- W4220703964 hasRelatedWork W1554570467 @default.
- W4220703964 hasRelatedWork W199381446 @default.
- W4220703964 hasRelatedWork W200741135 @default.
- W4220703964 hasRelatedWork W2052986792 @default.
- W4220703964 hasRelatedWork W2380262342 @default.
- W4220703964 hasRelatedWork W2943076469 @default.
- W4220703964 hasRelatedWork W2994384610 @default.
- W4220703964 hasRelatedWork W3122043903 @default.
- W4220703964 hasRelatedWork W3123374792 @default.
- W4220703964 hasRelatedWork W92823007 @default.
- W4220703964 hasVolume "17" @default.
- W4220703964 isParatext "false" @default.
- W4220703964 isRetracted "false" @default.
- W4220703964 workType "article" @default.