The Italian children’s hospital IRCCS Burlo Garofalo in Trieste (IRCCS) and the Division of Pediatrics, University Medical Centre Ljubljana in Slovenia (UMCL) joined forces along with technology partners in the international CATTEDRA project: crossborder cooperation for innovative diagnosis of rare diseases in pediatricians.

Through their collaboration, the partners aim to share knowledge and work on improving the therapeutic methodologies and diagnostic possibilities of four rare immune-mediated inflammatory diseases in children.

The project will result in the collection, management, and use of data for two purposes:

  • To support active patient monitoring and disease management to improve children’s health and overall quality of life. The platform will become a tool for everyday clinical practice.
  • To allow anonymized data analysis and data exchange which will support clinically related research and industry-partner research.

To support the project, Better provided its Digital Health Platform and all the services needed to
customize clinical content across diseases.


clinical registries in 1 application

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of newly diagnosed juvenile patients with rare immune-mediated inflammatory diseases


data points to support the treatment of young patients

Project description

The Italian children’s hospital IRCCS Burlo Garofolo in Trieste (IRCCS) and the Division of Pediatrics, University Medical Centre Ljubljana in Slovenia (UMCL) joined forces along with technology partners in the international CATTEDRA project. Through their collaboration, the partners aim to share knowledge and work on improving the therapeutic methodologies and diagnostic possibilities of rare immune-mediated inflammatory diseases in children, such as juvenile idiopathic arthritis (JIA), juvenile dermatomyositis (JDM), systemic lupus erythematosus (SLE), autoinflammatory disease and inherited immune deficiencies.

The project will strengthen collaboration between the two hospitals to increase knowledge about juvenile autoimmune diseases in neighbouring regions. All results will be shared among the two collaborating hospitals.

Additionally, the project will result in:

  • a feasibility study of the 4 innovative diagnostic tests developed, which will combine the experiences of IRCCS and UCML
  • new laboratory methods, which will enable doctors to better understand how the diseases progress
Every time we did an analysis, we needed new excel files, and there was a lot of work done to input the right data before we could analyse it. We wanted the data to be entered once so we could all access it and use it for further analysis.

Assist. Mojca Zajc Avramovič, MD, PhD, Spec. Paediatrician

Clients’ needs and challenges
  • The need to setup collaboration and data exchange between hospitals with different digital maturities, and an approach to treatment and available data sets – Ljubljana, Slovenia and Trieste, Italy
  • Obtaining enough high-quality structured data for both active patient monitoring, and analyses and studies requirements, with all of it being sharable
  • Specific disease assessments and patient-reported outcomes needed for research were not collected systemically and were done on paper
  • Patient data was generated in various systems or applications and was sometimes on paper, so it needed to be compiled manually
  • Real-time analysis of patient data
  • The ability to collaborate in clinical trials and studies
Key benefits
  • The solutions enable the systematic and effortless collection and management of patient data:
    high-quality and structured data is entered once, and then medical teams can access it according to their needs and use it for further analysis,
  • Agility and vendor independence:
    the design and setup of a registry can be done without a high level of technical or programming knowledge in a short time, and with fewer resources. Furthermore, hospitals can add their own use-cases into the registries by themselves
  • Health data can be used for various purposes:
    such as clinical practice and research activities and can be shared with the industry in a safe way
  • Giving knowledge back to the community:
    some of the templates are included in the Clinical Knowledge Manager for further use by other care institutions.

Registries for rare diseases in children were set up on Better Platform.

Better solutions


Better Platform allows institutions to build, deploy, and manage care plans and registries across use cases and institutions.

The platforms supports:

  • A design of clinical registry templates that enables clinical leads and programme managers to plan strategies and provide frameworks for clinical staff on the floor. Institutions can build or customise assessments and patient reported outcomes, and also regularly visit check points and link them to a care plan without having to do any programming.
  • Setting up a clinical registry for an institution which will be used by clinical leads, department heads, and the clinical staff with the authority to initiate a new care plan or registry based on the available care plan templates. Institutions can set up tasks and reminders and manage fine-grain access to patients and registries per user group, or individual care team member.
  • The management of patient inclusion and monitoring per clinical registry. This module brings the capabilities of managing patients’ inclusion in one or many registries, follow-up, and monitoring patients during inclusion, which will mostly be used by care team members. Besides the ability to enter, edit, and view patients’ clinical data, the module has an easy and comprehensive visualisation element.
  • Querying and extracting data. Care teams and researchers can also access and extract full patient data, or anonymised clinical data.

Within the project, Better’s clinical analysts and data scientists also provided all data models and clinical entry forms needed. The clinical content included covers laboratory results, medications and adverse events, disease-specific assessments and examinations, and Patient-Reported Outcome Measures (PROMs). The platform also provides the capability of integration with the existing applications being used in the hospital.

Hospitals can, at any time, quickly adapt or add new clinical content to their needs. For instance, COVID-19 may have similar effects to the body as immune-mediated inflammatory diseases. That is why hospitals decided to set up additional clinical forms for COVID-19-related data to be used for research. This was added easily, due to the flexibility and agility of Better Platform.

We need to get as much data as possible. Trieste and Ljubljana may have a different approach to the same disease diagnosis and treatment, and it is difficult to merge it. That is why we are working on homologating the registries.

Dr Andrea Taddio, MD

Better approach

1. The development and implementation of the registries:

  •  designing openEHR data models and input forms: a weekly workshop with clinicians, where we clarify the requirements and review data models and forms developed
  • integration of data from the EHR system
  • testing and quality assurance
  • the start of data collection, and using the application

2. The deployment of the Digital Health Platform, and the launch of turn-key content, which is ready to use in clinical practice.

3. Some clinical content is shared in the clinical community on the Clinical Knowledge Manager, so it is also available for other uses cases.

4. On-boarding the project team so that all further adaptations can be done by hospital team members themselves.

It is not yet possible to predict how an individual disease will progress in a specific patient, so we would like to collect data as comprehensively as possible to be able to assess disease progression, and then treat the patient accordingly.

Assist. Mojca Zajc Avramovič, MD, PhD

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