Rare Disease Registries Classification and Characterization: A Data Mining Approach
Santoro M., Coi A., Lipucci Di Paola M., Bianucci A.M., Gainotti S., Mollo E., Taruscio D., Vittozzi L., Bianchi F.
Public Health Genomics 2015;18:113-122 (DOI:10.1159/000369993)

Characterization and classification of Rare Disease Registries by using exploratory data analyses
Alessio Coi, Michele Santoro, Michele Lipucci, Anna Maria Bianucci, Sabina Gainotti, Emanuela Mollo, Luciano Vittozzi, Domenica Taruscio and Fabrizio Bianchi
Orphanet Journal of Rare Diseases 2014, 9(Suppl 1):P4 doi:10.1186/1750-1172-9-S1-P4
The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration
Taruscio D, Mollo E, Gainotti S, Posada de la Paz M, Bianchi F, Vittozzi L
Arch Public Health. 2014 Oct 13;72(1):35. doi: 10.1186/2049-3258-72-35. eCollection 2014.
PMID: 25352985 [PubMed] PMCID: PMC4210567
National Registries of Rare Diseases in Europe: An Overview of the Current Situation and Experiences.
Taruscio D, Vittozzi L, Choquet R, Heimdal K, Iskrov G, Kodra Y, Landais P, Posada M, Stefanov R, Steinmueller C, Swinnen E, Van Oyen H.
Public Health Genomics. 2014 Sep 9. [Epub ahead of print] PMID: 25228300 [PubMed – as supplied by publisher]
A model for the European platform for rare disease registries.
Vittozzi L, Gainotti S, Mollo E, Donati C, Taruscio D.
Public Health Genomics. 2013;16(6):299-304. doi: 10.1159/000355935. Epub 2014 Feb 3.
PMID: 24503590 [PubMed – indexed for MEDLINE]
The current situation and needs of rare disease registries in Europe.
Taruscio D, Gainotti S, Mollo E, Vittozzi L, Bianchi F, Ensini M, Posada M.
Public Health Genomics. 2013;16(6):288-98. doi: 10.1159/000355934. Epub 2014 Feb 3.
PMID: 24503589 [PubMed – indexed for MEDLINE]
EPIRARE survey on activities and needs of rare disease registries in the European Union
Domenica Taruscio1*, Sabina Gainotti1, Luciano Vittozzi1, Fabrizio Bianchi2, Monica Ensini3, Manuel Posada4
Orphanet Journal of Rare Diseases 2012, 7(Suppl 2):A22

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