The paediatric department Hospital of Lithuanian University of Health Sciences Kaunas Clinics invited us to present on Digitalisation of primary care to leave no child behind. The need for early diagnosis, coordination of care and the use of the ICF was emphasised. Exchange data between different hospitals in Lithuania and...
"Digital child health: opportunities and obstacles. A joint statement of European Academy of Paediatrics and European Confederation of Primary Care Paediatricians." Published December 2023, Frontiers in Pediatrics.
In a joint statement of European Academy of Paediatrics and European Confederation of Primary Care Paediatricians the opportunities and obstacles of digital child...
Millions of children with disabilities around the globe continue to be left behind. Often, this neglect is the result of limited data.
Promoting the generation and dissemination of knowledge on disabling conditions in children depends on the availability of primary child health data. At the HL7 Working Group during the...
Stichting Rare Care World kon in 2023 dankzij subsidie van ZonMW het project 'De taal van het sociaal model waarin elk individu zich vertegenwoordigd weet' uitvoeren.
In 2023 heeft de Wereldgezondheidsorganisatie (WHO) een aanbeveling voor alle lidstaten aangenomen om rehabilitatie in zorgsystemen te versterken. Hieronder valt het bevorderen van het...
Deelonderzoek Rijksuniversiteit Groningen
Kunnen mensen met een chronische aandoening zelf hun dagelijks leven in kaart brengen met de methode ICF?(*) Het antwoord is ja. De Rijksuniversiteit Groningen heeft in samenwerking met Stichting RCW met wetenschappelijk onderzoek bevestigd dat zij dat prima zelf kunnen.
Achtergrond
Veel mensen met een chronische aandoening...
At the LOINC conference in Atlanta, USA, Liesbeth Siderius and Sahan Perera gave their presentation 'Digital Modeling of Primary Child Health’ on Wednesday October 18, 2023.
The digital child health model combines codes as the ICD, ICF , SNOMED and LOINC following a growing and developing child. The LOINC has...
Organisations for rare diseases in the Netherlands are calling on Minister Kuipers to set up a digital network so that Dutch citizens have the opportunity to gain control over their own health data.
People with a (chronic) condition and/or disability must be able to trust that the government organizes a...
For the 10th International Congress on Shwachman Diamond Syndrome (SDS) in April 2023 in Cambridge, England, we produced this poster. ICF is an important tool to identify daily life of people with SDS.
In 2022, the Shwachman Support Holland Foundation and Rare Care World developed ICF-questionnaires for a number of rare disorders, including SDS (Shwachman Diamond Syndrome). An article about this appeared in 'Ieder(In)' in August 2023. The readers who responded to the article and wanted to participate in a follow-up study on...
From first feature to rare disease co-management with LOINC
Liesbeth Siderius
Foundation Rare Care Word & Foundation Shwachman Diamond Syndrome Support Holland
Marc de Graauw
magrit.nl
We developed a data model using common coding standards such as LOINC, ICD, Orpha, HPO, and ICF to describe disease-specific profiles. These profiles can...
