National Pediatric Rheumatologic Database (NPRD)

Overview
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The National Pediatric Rheumatologic Database (NPRD) has been conducted nationwide since 1997. The Gesellschaft für Kinder- und Jugendrheumatologie (GKJR) recommends participation as a quality assurance measure. As part of the documentation, children and adolescents with inflammatory rheumatic diseases who visit pediatric rheumatology centers once a year, along with their treating physicians, are asked to complete standardized doctor and patient or parent questionnaires. The physicians provide information about the diagnosis, disease activity, and treatment. From the patient and parent side, data about the health status and quality of life of the affected individuals are documented.

Programme: Programme Area 2 - Epidemiology and Health Services Research

SEEK ID: https://ldh.drfz.imise.uni-leipzig.de/projects/7

Public web page: Not specified

NFDI4Health PALs: No PALs for this Project

Project start date: 1st Jan 1998

Extended Metadata (Nfdi4Health MDS 3.3)

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Id of the project(*) : nfdi4health-30015

Resource classification(*)

Type of the resource : Study

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

Title/name : National Pediatric Rheumatologic Database
Language of the title/name : English

Acronym(s) of the Project

Acronym : NPRD
Language of the acronym : English

Description(s) of the Project

Description : The National Pediatric Rheumatologic Database (NPRD) has been conducted nationwide since 1997. The Gesellschaft für Kinder- und Jugendrheumatologie (GKJR) recommends participation as a quality assurance measure. As part of the documentation, children and adolescents with inflammatory rheumatic diseases who visit pediatric rheumatology centers once a year, along with their treating physicians, are asked to complete standardized doctor and patient or parent questionnaires. The physicians provide information about the diagnosis, disease activity, and treatment. From the patient and parent side, data about the health status and quality of life of the affected individuals are documented.
Language of the description : English

Keyword(s) describing the Project

Keyword(*) : rheumatic diseases in childhood and adolescence

Language(s) of the project : German

Web page of the project : https://www.drfz.de/forschungsprojekte/kerndokumentation-rheumakranker-kinder-und-jugendlicher/

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(*) : Kirsten
Family name(s)(*) : Minden
Digital identifier(s)
Identifier(*) : 0000-0003-2775-0111
Scheme(*) : ORCID
Email address : minden@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

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(*) : Jens
Family name(s)(*) : Klotsche
Digital identifier(s)
Identifier(*) : Not specified
Scheme(*) : Not specified
Email address : jens.klotsche@drfz.de
Phone number : Not specified
Organisation(s) associated with the contributor
Name(*) : German Rheumatology Research Center
Address : Not specified
Web page : Not specified
Digital identifier(s)
Identifier(*) : Not specified
Scheme(*) : Not specified
Identifier(*) : Not specified
Scheme(*) : Not specified
Name(*) : Not specified
Address : Not specified
Web page : Not specified
Digital identifier(s)
Identifier(*) : Not specified
Scheme(*) : Not specified
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 : Longitudinal
Primary health condition(s) or disease(s) considered in the Project
Primary health condition or disease name(*) : juvenile idiopathic arthritis;
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M08.; M09.
Primary health condition or disease name(*) : Osteomyelitis, chronic nonbacterial osteomyelitis;
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M86.
Primary health condition or disease name(*) : systemic lupus erythematosus
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M32.
Primary health condition or disease name(*) : Dermatomyositis
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M33.
Primary health condition or disease name(*) : Systemic sclerosis
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M34.
Primary health condition or disease name(*) : Other diseases with systemic involvement of the connective tissue,
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M35.
Primary health condition or disease name(*) : Non-neuropathic heredofamilial amyloidosis, other inflammatory rheumatic diseases
Terminology/classification(*) : ICD-10
Code of the health condition or disease : E85.
Primary health condition or disease name(*) : vasculitis; Panarteritis nodosa and related conditions; Other necrotising vasculopathies
Terminology/classification(*) : ICD-10
Code of the health condition or disease : M30.; M31.
Groups of diseases or conditions(*)
Which groups of diseases or conditions were the data collected on? : Factors influencing health status and contact with health services (XXI)
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 : Not specified
End date : Not specified
Mono- or multicentric? : Multicentric
Number of centers : Not specified
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(*) : 1
Unit of age(*) : Months
Eligibility criteria: Maximum age
Maximum eligible age(*) : 18
Unit of age(*) : Years
Eligible gender : Not applicable
Inclusion criteria : rheumatic diseases
Exclusion criteria : Not specified
Population of the Project(*)
Coverage : National
Country(ies) : Germany, Austria, Switzerland
Region(s) and/or city(ies) : DACH region
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(*) : analysis of the current care situation for children and adolescents with rheumatic diseases
Description of the outcome measure : Not specified
Type of the outcome measure : Primary
Time point(s) of assessment : yearly
Additional information about the Project : Not specified
Additional assessments/measurements in the Project : Physical activity, 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? : Not specified
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

National Pediatric Rheumatologic Database (NPRD)

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