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OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases

Standard

OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases. / Schaaf, Jannik; Kadioglu, Dennis; Goebel, Jens; Behrendt, Christian-Alexander; Roos, Marco; van Enckevort, David; Ückert, Frank; Sadiku, Fatlume; Wagner, Thomas O F; Storf, Holger.

in: Stud Health Technol Inform, Jahrgang 253, 2018, S. 209-213.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

Schaaf, J, Kadioglu, D, Goebel, J, Behrendt, C-A, Roos, M, van Enckevort, D, Ückert, F, Sadiku, F, Wagner, TOF & Storf, H 2018, 'OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases', Stud Health Technol Inform, Jg. 253, S. 209-213. https://doi.org/10.3233/978-1-61499-896-9-209

APA

Schaaf, J., Kadioglu, D., Goebel, J., Behrendt, C-A., Roos, M., van Enckevort, D., Ückert, F., Sadiku, F., Wagner, T. O. F., & Storf, H. (2018). OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases. Stud Health Technol Inform, 253, 209-213. https://doi.org/10.3233/978-1-61499-896-9-209

Vancouver

Schaaf J, Kadioglu D, Goebel J, Behrendt C-A, Roos M, van Enckevort D et al. OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases. Stud Health Technol Inform. 2018;253:209-213. https://doi.org/10.3233/978-1-61499-896-9-209

Bibtex

@article{c8a9651b1d414df691b7766e351b2dff,
title = "OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases",
abstract = "The Open Source Registry for Rare Diseases (OSSE) provides a concept and a software for the management of registries for patients with rare diseases. A disease is defined as rare if less than 5 out of 10,000 people are affected. Up to date, approximately 6,000 rare diseases are catalogued. Networking and data exchange for research purposes remains challenging due to the paucity of interoperability and due to the fact that small data stocks are stored locally. The so called {"}Findable, Accessible, Interoperable, Reusable{"} (FAIR) Data Principles have been developed to improve research in the field of rare diseases. Subsequently, the OSSE architecture was adapted to implement the FAIR Data Principles. Therefore, the so-called FAIR Data Point was integrated into OSSE to provide a description of metadata in a FAIR manner. OSSE relies on the existing metadata repository (MDR), which is used in to define data elements in the system. This is an important step towards unified documentation across multiple registries. The integration and use of new procedures to improve interoperability plays an important role in the context of registries for rare diseases.",
keywords = "Humans, Metadata, Rare Diseases, Registries, Research, Software, Statistics as Topic",
author = "Jannik Schaaf and Dennis Kadioglu and Jens Goebel and Christian-Alexander Behrendt and Marco Roos and {van Enckevort}, David and Frank {\"U}ckert and Fatlume Sadiku and Wagner, {Thomas O F} and Holger Storf",
year = "2018",
doi = "10.3233/978-1-61499-896-9-209",
language = "English",
volume = "253",
pages = "209--213",

}

RIS

TY - JOUR

T1 - OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases

AU - Schaaf, Jannik

AU - Kadioglu, Dennis

AU - Goebel, Jens

AU - Behrendt, Christian-Alexander

AU - Roos, Marco

AU - van Enckevort, David

AU - Ückert, Frank

AU - Sadiku, Fatlume

AU - Wagner, Thomas O F

AU - Storf, Holger

PY - 2018

Y1 - 2018

N2 - The Open Source Registry for Rare Diseases (OSSE) provides a concept and a software for the management of registries for patients with rare diseases. A disease is defined as rare if less than 5 out of 10,000 people are affected. Up to date, approximately 6,000 rare diseases are catalogued. Networking and data exchange for research purposes remains challenging due to the paucity of interoperability and due to the fact that small data stocks are stored locally. The so called "Findable, Accessible, Interoperable, Reusable" (FAIR) Data Principles have been developed to improve research in the field of rare diseases. Subsequently, the OSSE architecture was adapted to implement the FAIR Data Principles. Therefore, the so-called FAIR Data Point was integrated into OSSE to provide a description of metadata in a FAIR manner. OSSE relies on the existing metadata repository (MDR), which is used in to define data elements in the system. This is an important step towards unified documentation across multiple registries. The integration and use of new procedures to improve interoperability plays an important role in the context of registries for rare diseases.

AB - The Open Source Registry for Rare Diseases (OSSE) provides a concept and a software for the management of registries for patients with rare diseases. A disease is defined as rare if less than 5 out of 10,000 people are affected. Up to date, approximately 6,000 rare diseases are catalogued. Networking and data exchange for research purposes remains challenging due to the paucity of interoperability and due to the fact that small data stocks are stored locally. The so called "Findable, Accessible, Interoperable, Reusable" (FAIR) Data Principles have been developed to improve research in the field of rare diseases. Subsequently, the OSSE architecture was adapted to implement the FAIR Data Principles. Therefore, the so-called FAIR Data Point was integrated into OSSE to provide a description of metadata in a FAIR manner. OSSE relies on the existing metadata repository (MDR), which is used in to define data elements in the system. This is an important step towards unified documentation across multiple registries. The integration and use of new procedures to improve interoperability plays an important role in the context of registries for rare diseases.

KW - Humans

KW - Metadata

KW - Rare Diseases

KW - Registries

KW - Research

KW - Software

KW - Statistics as Topic

U2 - 10.3233/978-1-61499-896-9-209

DO - 10.3233/978-1-61499-896-9-209

M3 - SCORING: Journal article

C2 - 30147075

VL - 253

SP - 209

EP - 213

ER -