Extension of the cBioPortal System to Include a Site-Centered Clinical Trial Search at the University Hospital Schleswig-Holstein.

Introduction: In this work, a site-centered trial search was implemented for the Molecular Tumor Board of the University Hospital Schleswig-Holstein (UKSH).

Methods: The UKSH Study Registry was selected as the data source as it provides detailed and up-to-date information for local clinical trials. A Fast Healthcare Interoperability Resources (FHIR) server was selected as an adequate intermediate format.

Implementation of HL7 FHIR-Based Terminology Services for a National Federated Health Research Infrastructure.

Introduction: As part of the German Medical Informatics Initiative (MII) and Network University Medicine (NUM), a central research terminology service (TS) is provided by the Service Unit Terminology Services (SU-TermServ). This HL7 FHIR-based service depends on the timely and comprehensive availability of FHIR terminology resources to provide the necessary interactions for the distributed MII/NUM infrastructure. While German legislation has recently instituted a national terminology service for medical classifications and terminologies, the scope of the MII and NUM extends beyond routine patient care, encompassing the need for supplementary or specialized services and terminologies that are not commonly utilized elsewhere.

PanCareSurPass Project in Germany: Local Developments for the Multi-Country Implementation Study of SurPass v2.0 at a Single Center in Germany.

The implementation of standardized long-term follow-up care for childhood cancer survivors is crucial for ensuring their well-being. In this paper, we focus on the integration of the Survivorship Passport into the German healthcare system, particularly through collaboration between the University Hospital Schleswig-Holstein and the German Childhood Cancer Registry. The SurPass aims to provide comprehensive treatment summaries and personalized care plans based on international guidelines.

Effectiveness of structured, multidisciplinary long-term care for pediatric cancer survivors: protocol of the multicenter, randomized-controlled AELKI study.

Background: In Germany, around 2.250 children and adolescents are diagnosed with cancer each year. Despite generally positive long-term survival rates, many patients must cope with late effects of the disease and its treatment.

Metadata Driven Integration of Clinical Data for Secondary Use in FHIR - A Pilot Study at the UKSH.

Introduction: The reuse of clinical data from clinical routine is a topic of research within the field of medical informatics under the term secondary use. In order to ensure the correct use and interpretation of data, there is a need for context information of data collection and a general understanding of the data. The use of metadata as an effective method of defining and maintaining context is well-established, particularly in the field of clinical trials.

Development, Involvement and Use of an Overarching In-House Registry for Clinical Trials.

Introduction: Conducting clinical studies is an integral part of the clinical research repertoire of university hospitals. A wealth of organizational competences must always be available in a central location and in an up-to-date form for appropriate administration. Information such as the number of ongoing studies, and the number of enrolled participants is required for tasks related to e.

Challenges and Lessons Learned in Mapping HL7 v2 Data to openEHR: Insights from UKSH Medical Data Integration Center.

This paper explores the challenges and lessons learned during the mapping of HL7 v2 messages structured using custom schema to openEHR for the Medical Data Integration Center (MeDIC) of the University Hospital, Schleswig-Holstein (UKSH). Missing timestamps in observations, missing units of measurement, inconsistencies in decimal separators and unexpected datatypes were identified as critical inconsistencies in this process. These anomalies highlight the difficulty of automating the transformation of HL7 v2 data to any standard, particularly openEHR, using off-the-shelf tools.

Integration of Oncological Data into openEHR: A Path Towards Improved Cancer Care and Research.

The integration of tumor-related diagnosis and therapy data is a key factor for cancer-related collaborative projects and research projects on-site. The Medical Data Integration Center (MeDIC) of the University Hospital Schleswig-Holstein, resulting from the Medical Informatics Initiative and Network University Medicine in Germany, has agreed on an openEHR-based data management based on a centralized repository with harmonized annotated data. Consequently, the oncological data should be integrated into the MeDIC to interconnect the information and thus gain added value.

Childhood Cancer Survivorship Passport Challenges in the European Health Data Space.

Innovation in cancer therapy has increased childhood cancer survival rates. However, survivors are still at risk of developing late effects. In the digital transformation of the health sector, the Survivorship Passport (SurPass) can support long-term follow-up care plans.

A Multimodal Lifestyle Psychosocial Survivorship Program in Young Cancer Survivors: The CARE for CAYA Program-A Randomized Clinical Trial Embedded in a Longitudinal Cohort Study.

Importance: There is a lack of trials examining the effect of counseling interventions for child, adolescent, and younger adult (CAYA) cancer survivors.

Objective: To assess lifestyle habits and the psychosocial situation of CAYAs to determine the efficacy of needs-based interventions in the CARE for CAYA program (CFC-P).

Design, Setting, And Participants: The CFC-P was conducted as a multicenter program in 14 German outpatient clinics, mainly university cancer centers.

Mettertron - Bridging Metadata Repositories and Terminology Servers.

To provide clinical data in distributed research architectures, a fundamental challenge involves defining and distributing suitable metadata within Metadata Repositories. Especially for structured data, data elements need to be bound against suitable terminologies; otherwise, other systems will only be able to interpret the data with complex and error-prone manual involvement. As current Metadata Repository implementations lack support for querying externally defined terminologies in FHIR terminology servers, we propose an intermediate solution that uses appropriate annotations on metadata elements to allow run-time Terminology Services mediated queries of that metadata.

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics.

Purpose: Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures. To establish a comprehensive knowledge base on CCS' long-term health in Germany, a database was developed in cooperation with the GCCR.

TermiCron - Bridging the Gap Between FHIR Terminology Servers and Metadata Repositories.

The large variability of data models, specifications, and interpretations of data elements is particular to the healthcare domain. Achieving semantic interoperability is the first step to enable reuse of healthcare data. To ensure interoperability, metadata repositories (MDR) are increasingly used to manage data elements on a structural level, while terminology servers (TS) manage the ontologies, terminologies, coding systems and value sets on a semantic level.

TerminoDiff - Detecting Semantic Differences in HL7 FHIR CodeSystems.

While HL7 FHIR and its terminology package have seen a rapid uptake by the research community, in no small part due to the wide availability of tooling and resources, there are some areas where tool availability is still lacking. In particular, the comparison of terminological resources, which supports the work of terminologists and implementers alike, has not yet been sufficiently addressed. Hence, we present TerminoDiff, an application to semantically compare FHIR R4 CodeSystem resources.

Understanding the Nature of Metadata: Systematic Review.

Background: Metadata are created to describe the corresponding data in a detailed and unambiguous way and is used for various applications in different research areas, for example, data identification and classification. However, a clear definition of metadata is crucial for further use. Unfortunately, extensive experience with the processing and management of metadata has shown that the term "metadata" and its use is not always unambiguous.

Providing ART-DECOR ValueSets via FHIR Terminology Servers - A Technical Report.

To ensure semantic interoperability within healthcare systems, using common, curated terminological systems to identify relevant concepts is of fundamental importance. The HL7 FHIR standard specifies means of modelling terminological systems and appropriate ways of accessing and querying these artefacts within a terminology server. Hence, initiatives towards healthcare interoperability like IHE specify not only software interfaces, but also common codes in the form of value sets and code systems.

Hands on the Medical Informatics Initiative Core Data Set - Lessons Learned from Converting the MIMIC-IV.

With the steady increase in the connectivity of the healthcare system, new requirements and challenges are emerging. In addition to the seamless exchange of data between service providers on a national level, the local legacy data must also meet the new requirements. For this purpose, the applications used must be tested securely and sufficiently.

One Conference, Three Proceedings - Which Papers Should I Submit and How? A Publication Strategy for Young Scientists Regarding the GMDS Annual Conference and Beyond (Editorial).

The primary intention of any scientific work is to share the gained knowledge and to contribute to the knowledge and progress in the scientific domain. The wide range of journals and conferences, each with specific submission requirements, can be difficult to navigate, especially for young scientists without extensive experience. But a suitable publication strategy can be helpful, especially at the beginning of a scientific career.

openEHR Mapper - A Tool to Fuse Clinical and Genomic Data Using the openEHR Standard.

Precision medicine is an emerging and important field for health care. Molecular tumor boards use a combination of clinical and molecular data, such as somatic tumor mutations to decide on personalized therapies for patients who have run out of standard treatment options. Personalized treatment decisions require clinical data from the hospital information system and mutation data to be accessible in a structured way.

APERITIF - Automatic Patient Recruiting for Clinical Trials Based on HL7 FHIR.

Clinical trials are carried out to prove the safety and effectiveness of new interventions and therapies. As diseases and their causes continue to become more specific, so do inclusion and exclusion criteria for trials. Patient recruitment has always been a challenge, but with medical progress, it becomes increasingly difficult to achieve the necessary number of cases.

Analysis of ISO/TS 21526 Towards the Extension of a Standardized Query API.

Metadata is often used for different tasks in the field of medical informatics: semantic description of data, quality validation, data integration, or information retrieval. Metadata definitions are captured and curated in time-consuming tasks and stored in metadata repositories that manage and preserve the metadata. Due to technical and legal restrictions, metadata is rarely as easily accessible and interoperable as it is necessary for modern information systems.

A Smart Mapping Editor for Standardised Data Transformation.

The integration of heterogeneous healthcare data sources is a necessary process to enable the secondary use valuable information in clinical research. Data integration is time-consuming for data stewards. The transformation using predefined rules for data harmonization can reduce the time-consuming and error-prone work and ease the data integration at various sites.