Sometimes features or diseases of the pregnant female may have direct consequences when then the child is born. HL7 international is working on an International Birth And Child Model Implementation Guide

https://build.fhir.org/ig/HL7/fetal_records/background.html

We developed a (draft) digital scheme for maternal diabetes during pregnancy and actions to be taken when the...

Voor mensen met ingewikkelde zeldzame aandoening kan het zelf delen van gegevens complicaties voorkomen en zelfs levensreddend zijn. Met een Persoonlijke Gezondheids Omgeving kan dat (voor uitleg zie filmpje op deze pagina https://rarecare.world/nl). Het is onbegrijpelijk dat er miljoenen publiek geld zijn uitgegeven aan PGO’s en er nu geconstateerd...

Evidence based guidelines are the basis of global child health care. Clinical data points derived from guidelines by clinicians serve as interoperable terminologies. Care delivery is ‘translated’ into digital language as JSON. FHIR enables semantic interoperability in health information exchange standards systems for clinical and administrative content. A defined FHIR...

People with a chronic disease and/or rare condition can use an ICF (International Classification of Functioning, Disability and Health) * to digitally fill in what their disability means for their daily life. For this purpose, Stichting Rare Care World (RCW) and Open Health Hub have developed an online ICF-form that...

Dissemination and generation of knowledge on complex diseases in children depends on the availability and interoperability of primary child health data.

We identified a structured set of interoperable international data terminologies such as the International Classification of Diseases (ICD) and International Classification of Function (ICF) as well as the numerical...

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...