Concept for the provision of an infrastructure for the cross-sectoral, data protection-compliant "Secondary Use of Data" for Research and Science

Concept for the provision of an infrastructure for the cross-sectoral, data protection-compliant "Secondary Use of Data" for Research and Science - DATA NEXUS

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00032801

Enrollment

300

Registered

2023-11-13

Start date

2023-06-29

Completion date

Unknown

Last updated

2026-06-01

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

all inflammatory rheumatic diseases M06 M05 M32 M45

Interventions

Group 1: Data from patients with inflammatory rheumatic diseases is transferred to a Medical Dataspace and is then available for research.

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: - Established or first diagnosed disease of the rheumatic type or clarification examination in the case of a suspected disease of the rheumatic type - Sufficient knowledge of German - Ability to give consent - Signed declaration of consent for data transfer and data use in the Data Nexus application. - Signed written consent for the processing of the evaluation data - If the patients have already stored biomaterials in the RHINEVIT biobank or if the patients also consent to the donation of biomaterials to the RHINEVIT biobank separately to the Data Nexus consent on the consent day for their participation in Data Nexus: Presence of a consent form for the RHINEVIT biobank and presence of biomaterials and associated annotation data. - Lack of consent for the RHINEVIT biobank is not an exclusion criterion for participation in Data Nexus.

Exclusion criteria

Exclusion criteria: - Age < 18 years - Lack of German language skills - Lack of capacity to consent - Presence of a guardian

Design outcomes

Primary

Measure	Time frame
The primary objective of the DATA NEXUS data solution is to enable new concepts for patient-centred scientific and clinical research from health care data. Among other things, this should contribute to early detection and improved disease progression and thus outcomes, as well as generate evidence that is required for new medication developments. The Data Nexus platform will enable the use of AI/ML methods.	—

Measure

Time frame

The primary objective of the DATA NEXUS data solution is to enable new concepts for patient-centred scientific and clinical research from health care data. Among other things, this should contribute to early detection and improved disease progression and thus outcomes, as well as generate evidence that is required for new medication developments. The Data Nexus platform will enable the use of AI/ML methods.

—

Secondary

Measure	Time frame
Natural course of the disease Predictive characteristics of disease progression Health services research	—

Countries

Germany

Contacts

Public ContactJutta Richter

Universitätsklinikum Düsseldorf

rheuma@med.uni-duesseldorf.de+492118117817

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Jun 11, 2026