Jove
Visualize
Contact Us
JoVE
x logofacebook logolinkedin logoyoutube logo
ABOUT JoVE
OverviewLeadershipBlogJoVE Help Center
AUTHORS
Publishing ProcessEditorial BoardScope & PoliciesPeer ReviewFAQSubmit
LIBRARIANS
TestimonialsSubscriptionsAccessResourcesLibrary Advisory BoardFAQ
RESEARCH
JoVE JournalMethods CollectionsJoVE Encyclopedia of ExperimentsArchive
EDUCATION
JoVE CoreJoVE BusinessJoVE Science EducationJoVE Lab ManualFaculty Resource CenterFaculty Site
Terms & Conditions of Use
Privacy Policy
Policies

Related Concept Videos

Mouse Models of Cancer Study02:43

Mouse Models of Cancer Study

Mice have long served as models for studying human biology and pathology because of their phylogenetic and physiological similarity with humans. They are also easy to maintain and breed in the laboratory, and hence, many inbred strains are now available for research. Studies on mice have contributed immeasurably to our understanding of cancer biology.
The development of transgenic, knockout, and knock-in mice has led to an exponential increase in their use as model organisms in research,...
Mouse Models of Cancer Study02:43

Mouse Models of Cancer Study

Mice have long served as models for studying human biology and pathology because of their phylogenetic and physiological similarity with humans. They are also easy to maintain and breed in the laboratory, and hence, many inbred strains are now available for research. Studies on mice have contributed immeasurably to our understanding of cancer biology.
The development of transgenic, knockout, and knock-in mice has led to an exponential increase in their use as model organisms in research,...

You might also read

Related Articles

Articles linked to this work by shared authors, journal, and citation graph.

Sort by
Same author

Utilizing Routine Care Data of Rare Diseases: Challenges, Chances and Call for Collaboration.

Studies in health technology and informatics·2026
Same author

Towards FAIR Patient Reported Outcome: Application of the Interoperability Principle for Mobile Pandemic Apps.

Studies in health technology and informatics·2021
Same author

Blunted salivary and plasma cortisol response in patients with panic disorder under psychosocial stress.

International journal of psychophysiology : official journal of the International Organization of Psychophysiology·2013
See all related articles

Related Experiment Video

Updated: Jul 6, 2026

Patient-specific Modeling of the Heart: Estimation of Ventricular Fiber Orientations
12:09

Patient-specific Modeling of the Heart: Estimation of Ventricular Fiber Orientations

Published on: January 8, 2013

13.6K

Modeling Rare Disease Datasets with ART-DECOR.

Marco Schaarschmidt1,2

  • 1Berlin Institute of Health (BIH), Germany.

Studies in Health Technology and Informatics
|August 23, 2024
PubMed
Summary

This study models rare disease datasets using ART-DECOR, emphasizing FAIR principles. The French minimal dataset

Area of Science:

  • Health Informatics
  • Data Modeling
  • Rare Diseases

Background:

  • Implementing FAIR principles is crucial for data sharing in rare disease research.
  • Standardized data models facilitate interoperability and reusability.
  • The ART-DECOR tool supports the creation of such data models.

Purpose of the Study:

  • To demonstrate the application of the ART-DECOR modeling tool for rare disease datasets.
  • To highlight the importance of FAIR data principles in rare disease data management.
  • To provide a model for developing national minimal datasets for rare diseases.

Main Methods:

  • Utilizing the ART-DECOR modeling tool for dataset development.
  • Applying the FAIR data principles (Findable, Accessible, Interoperable, Reusable) throughout the modeling process.
Keywords:
FAIR PrinciplesMinimal DatasetModelingRare Diseases

More Related Videos

In Vivo Modeling of the Morbid Human Genome using Danio rerio
12:31

In Vivo Modeling of the Morbid Human Genome using Danio rerio

Published on: August 24, 2013

20.7K
Databases to Efficiently Manage Medium Sized, Low Velocity, Multidimensional Data in Tissue Engineering
09:43

Databases to Efficiently Manage Medium Sized, Low Velocity, Multidimensional Data in Tissue Engineering

Published on: November 22, 2019

6.2K

Related Experiment Videos

Last Updated: Jul 6, 2026

Patient-specific Modeling of the Heart: Estimation of Ventricular Fiber Orientations
12:09

Patient-specific Modeling of the Heart: Estimation of Ventricular Fiber Orientations

Published on: January 8, 2013

13.6K
In Vivo Modeling of the Morbid Human Genome using Danio rerio
12:31

In Vivo Modeling of the Morbid Human Genome using Danio rerio

Published on: August 24, 2013

20.7K
Databases to Efficiently Manage Medium Sized, Low Velocity, Multidimensional Data in Tissue Engineering
09:43

Databases to Efficiently Manage Medium Sized, Low Velocity, Multidimensional Data in Tissue Engineering

Published on: November 22, 2019

6.2K
  • Developing a minimal dataset for rare diseases in France (SDM-MR.fr).

    • Main Results:

    • Successful modeling of the French minimal dataset for rare diseases (SDM-MR.fr) adhering to FAIR principles.
    • Demonstrated the utility of ART-DECOR for creating standardized health data models.
    • Established a precedent for developing similar minimal datasets in other countries.

    Conclusions:

    • The ART-DECOR tool is effective for modeling rare disease datasets according to FAIR principles.
    • The French minimal dataset serves as a successful example for international adaptation.
    • Standardized minimal datasets are essential for advancing rare disease research and collaboration.