• 26 Citations
  • 3 h-Index
20172018
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Fingerprint Dive into the research topics where Yllka Kodra is active. These topic labels come from the works of this person. Together they form a unique fingerprint.

  • 8 Similar Profiles
Rare Diseases Medicine & Life Sciences
Registries Medicine & Life Sciences
Information Dissemination Medicine & Life Sciences
Research Personnel Medicine & Life Sciences
Hereditary Hemorrhagic Telangiectasia Medicine & Life Sciences
Databases Medicine & Life Sciences
Huntington Disease Medicine & Life Sciences
Prader-Willi Syndrome Medicine & Life Sciences

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Research Output 2017 2018

  • 26 Citations
  • 3 h-Index
  • 2 Article
  • 1 Chapter
  • 1 Review article
11 Citations (Scopus)

Recommendations for improving the quality of rare disease registries

Kodra, Y., Weinbach, J., Posada-De-La-Paz, M., Coi, A., Lemonnier, S. L., van Enckevort, D., Roos, M., Jacobsen, A., Cornet, R., Ahmed, S. F., Bros-Facer, V., Popa, V., van Meel, M., Renault, D., von Gizycki, R., Santoro, M., Landais, P., Torreri, P., Carta, C., Mascalzoni, D. & 9 others, Gainotti, S., Lopez, E., Ambrosini, A., Müller, H., Reis, R., Bianchi, F., Rubinstein, Y. R., Lochmüller, H. & Taruscio, D., Aug 3 2018, In : International Journal of Environmental Research and Public Health. 15, 8, 1644.

Research output: Contribution to journalReview article

Open Access
Rare Diseases
Registries
Computational Biology
Information Systems
Documentation
7 Citations (Scopus)

The RD-Connect Registry & Biobank Finder: A tool for sharing aggregated data and metadata among rare disease researchers

Gainotti, S., Torreri, P., Wang, C. M., Reihs, R., Mueller, H., Heslop, E., Roos, M., Badowska, D. M., De Paulis, F., Kodra, Y., Carta, C., Martìn, E. L., Miller, V. R., Filocamo, M., Mora, M., Thompson, M., Rubinstein, Y., Posada De La Paz, M., Monaco, L., Lochmüller, H. & 1 others, Taruscio, D., May 1 2018, In : European Journal of Human Genetics. 26, 5, p. 631-643 13 p.

Research output: Contribution to journalArticle

Information Dissemination
Rare Diseases
Registries
Research Personnel
Research
8 Citations (Scopus)

Data quality in rare diseases registries

Kodra, Y., Posada De La Paz, M., Coi, A., Santoro, M., Bianchi, F., Ahmed, F., Rubinstein, Y. R., Weinbach, J. & Taruscio, D., Jan 1 2017, Advances in Experimental Medicine and Biology. Springer New York LLC, p. 149-164 16 p. (Advances in Experimental Medicine and Biology; vol. 1031).

Research output: Chapter in Book/Report/Conference proceedingChapter

Rare Diseases
Registries
Planning
Data Accuracy
Patient Care Planning

The Italian National Rare Diseases Registry: a model of comparison and integration with Hospital Discharge Data

National Rare Diseases Registry Collaborating Group, Dec 27 2017, In : Journal of Public Health.

Research output: Contribution to journalArticle

Rare Diseases
Registries
Hereditary Hemorrhagic Telangiectasia
Huntington Disease
Prader-Willi Syndrome