Symptoms of a rare, complex condition are apparent soon after birth. Children worldwide are vaccinated from a young age against diseases like whooping cough and measles to prevent serious complications. Other data is also recorded during these checkups.
Therefore, we advocate for the making of an international child summary in...
Using Unified Modeling Language (UML) to Bridge Clinical Practice and Health Data Interoperability in Paediatrics, Presentation Warsaw, 18 oktober 2025
One of the problems with digitally exchanging health data is that not every country uses the same code. Yet, this is the first requirement for data quality.
"Artsen die alleen het ziektebeeld zien, missen belangrijke informatie. Wat hebben patiënten naast medicijnen of behandeling nog meer nodig? Met patiëntgerichte vragenlijsten brengen zij dat straks in beeld" *
In een interview in MEdium, de nieuwsbrief van de Vereniging ME/CVS vertelt Liesbeth Siderius dat die vragenlijsten er zijn en gebruikt...
National Institute of Empowerment of Persons with Intellectual Disabilities of India co-organized a training on the International Classification of Function (ICF) on July 26th.2025. We were honoured to present on what one needs to know about digitalizing health and well-being. Digitalisation means computers talking in codes, standards and terminologies in...
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
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...
