German National Database of the Regional Cooperative Arthritis Centres (NDB)

Overview
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The NDB is a long-term prospective observational study of the health care situation in patients with inflammatory rheumatic diseases under routine rheumatology care in Germany. The NDB provides data on healthcare for patients with all forms of inflammatory rheumatic diseases, including arthritides, spondyloarthritides, connective tissue diseases and vasculitides. Physician- and patient-reported data are annually collected comprising disease activity, medication, comorbidities, disease impact and sociodemographic information. The project was initiated in 1993 by the German Rheumatology Research Center (DRFZ) in coordination with the German Society for Rheumatology (DGRh) and the German Collaborative Arthritis Centres (AGRZ).

Programme: Programme Area 2 - Epidemiology and Health Services Research

SEEK ID: https://ldh.drfz.imise.uni-leipzig.de/projects/5

Public web page: https://kerndokumentation.de/

NFDI4Health PALs: No PALs for this Project

Project created: 20th Jun 2025

Extended Metadata (Nfdi4Health MDS 3.3)

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Id of the project(*) : nfdi4health-30013

Resource classification(*)

Type of the resource : Study

Title(s)/name(s) of the Project

Title/name : German National Database of the Regional Cooperative Arthritis Centres
Language of the title/name : English

Acronym(s) of the Project

Acronym : NDB
Language of the acronym : English

Description(s) of the Project

Description : The NDB is a long-term prospective observational study of the health care situation in patients with inflammatory rheumatic diseases under routine rheumatology care in Germany. The NDB provides data on healthcare for patients with all forms of inflammatory rheumatic diseases, including arthritides, spondyloarthritides, connective tissue diseases and vasculitides. Physician- and patient-reported data are annually collected comprising disease activity, medication, comorbidities, disease impact and sociodemographic information. The project was initiated in 1993 by the German Rheumatology Research Center (DRFZ) in coordination with the German Society for Rheumatology (DGRh) and the German Collaborative Arthritis Centres (AGRZ).
Language of the description : English

Keyword(s) describing the Project

Keyword(*) : inflammatory rheumatic diseases

Keyword(*) : observational study

Keyword(*) : Not specified

Language(s) of the project : German

Web page of the project : https://kerndokumentation.de

Contributor(s) of the Project

Is it a personal or organisational contribution?(*) : Personal
Details about the contributing organisation(s)/institution(s)/group(s)
Contributor type(*) : Not specified
Funding identifier(s) : Not specified
Name of the organisation/institution/group(*) : Not specified
Details about the contributing person(s)
Contributor type(*) : Principal investigator
Given name(*) : Johanna
Family name(s)(*) : Callhoff
Digital identifier(s)
Identifier(*) : 0000-0002-3923-2728
Scheme(*) : ORCID
Email address : johanna.callhoff@drfz.de
Phone number : Not specified
Organisation(s) associated with the contributor
Name(*) : German Rheumatology Research Center
Address : Charitéplatz 1, 10117, Berlin, Berlin
Web page : Not specified
Digital identifier(s)
Identifier(*) : Not specified
Scheme(*) : Not specified

Alternative identifiers

Type of the registry(*) : Not specified
Identifier(*) : Not specified

Characteristics of the Project

Is it an interventional or non-interventional Project? : Non-interventional
Specification of the type of the Project
Interventional Project type : []
Non-interventional Project type : Trend, Longitudinal, Cross-sectional
Primary health condition(s) or disease(s) considered in the Project
Primary health condition or disease name(*) : Inflammatory rheumatic disease
Terminology/classification(*) : MeSH
Code of the health condition or disease : Rheumatoid Arthritis, Psoriatic Arthritis, Axial Spondyloarthritis, Connective Tissue Disease, Vasculitis
Groups of diseases or conditions(*)
Which groups of diseases or conditions were the data collected on? : Diseases of the musculoskeletal system and connective tissue (XIII), Certain infectious or parasitic diseases (I), Neoplasms (II), Diseases of the blood or blood-forming organs and certain disorders involving the immune mechanism (III), Endocrine, nutritional and metabolic diseases (IV), Mental and behavioural disorders (V), Diseases of the nervous system (VI), Diseases of the respiratory system (X), Diseases of the digestive system (XI), Diseases of the skin and subcutaneous tissue (XII)
On which diseases or conditions were the data collected? : []
Collects mortality data? : No
Administrative information about the Project
Status of the ethics committee approval : Request for approval submitted, approval granted
Overall Project status : Ongoing (II): Recruitment and data collection ongoing
Participants enrolled by invitation? : Not specified
Start date : 1 June 1993
End date : Not specified
Mono- or multicentric? : Multicentric
Number of centers : 17
One or more data providers? : Not specified
Number of data providers : Not specified
Primary subject(*) : Person
Eligibility criteria for Project participants
Eligibility criteria: Minimum age
Minimum eligible age(*) : 18
Unit of age(*) : Years
Eligibility criteria: Maximum age
Maximum eligible age(*) : Not specified
Unit of age(*) : Not specified
Eligible gender : Not applicable
Inclusion criteria : Not specified
Exclusion criteria : Not specified
Population of the Project(*)
Coverage : National
Country(ies) : Germany
Region(s) and/or city(ies) : Not specified
Interventions of the Project
Name of the intervention(*) : Not specified
Type of the intervention : Not specified
Additional information about the intervention : Not specified
Name(s) of the arm(s) associated with the given intervention : Not specified
Exposures of the Project
Name of the exposure : Not specified
Type of the exposure : Not specified
Additional information about the exposure : Not specified
Name(s) of the group(s) associated with the given exposure : Not specified
Outcome measures in the Project
Name of the outcome measure(*) : Physician-reported Outcome Measure
Description of the outcome measure : (Non-)Pharmacological, comorbidity, disease activity, inflammatory markers, joint involvement
Type of the outcome measure : Primary
Time point(s) of assessment : Annually
Name of the outcome measure(*) : Patient-reported Outcome Measure
Description of the outcome measure : Global health status, disease impact, physical functioning, morning stiffness, well-being, employment status, work disability
Type of the outcome measure : Primary
Time point(s) of assessment : Annually
Additional information about the Project : Not specified
Additional assessments/measurements in the Project : Physical activity, Tobacco use, Body weight, Body height, Sociodemographic information
Data sharing strategy of the Project(*)
Is it planned to share the data?(*) : No, there is no plan to make data available
Supporting documents available in addition to the data : []
When and for how long will the data be available? : Not specified
Criteria for data access : Not specified
Additional information about data sharing : Not specified
DataSHIELD/Opal infrastructure available? : No
Link to data request application : Not specified
Web page with additional information about data sharing : Not specified
Record linkage possible? : false
Non-interventional aspects of the Project
Temporal design : []
Target follow-up duration of the Project
Target follow-up duration(*) : Not specified
Unit of time(*) : Not specified
Number of follow-ups conducted : Not specified
Biosamples retained in a biorepository : []
Specific types of retained biosamples : Not specified
Interventional aspects of the Project
Numerical phase : Not specified
Masking of intervention(s) assignment
Masking implemented? : Not specified
Who is masked? : []
Additional information about masking : Not specified
Type of allocation of participants to an arm : Not specified
Off-label use of a drug product : Not specified

German National Database of the Regional Cooperative Arthritis Centres (NDB)

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