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Items: 1 to 20 of 108

1.

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
2.

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
3.

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. 2015;18(1):20-5. doi: 10.1159/000365897. Epub 2014 Sep 9.

PMID:
25228300
4.

A sustainable solution for the activities of the European network for surveillance of congenital anomalies: EUROCAT as part of the EU Platform on Rare Diseases Registration.

Kinsner-Ovaskainen A, Lanzoni M, Garne E, Loane M, Morris J, Neville A, Nicholl C, Rankin J, Rissmann A, Tucker D, Martin S.

Eur J Med Genet. 2018 Sep;61(9):513-517. doi: 10.1016/j.ejmg.2018.03.008. Epub 2018 Mar 27. Review.

5.

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.

6.

[A research roadmap for complementary and alternative medicine - what we need to know by 2020].

Fischer F, Lewith G, Witt CM, Linde K, von Ammon K, Cardini F, Falkenberg T, Fønnebø V, Johannessen H, Reiter B, Uehleke B, Weidenhammer W, Brinkhaus B.

Forsch Komplementmed. 2014;21(2):e1-16. doi: 10.1159/000360744. Epub 2014 Mar 24.

7.

Rare disease registries classification and characterization: a data mining approach.

Santoro M, Coi A, Lipucci Di Paola M, Bianucci AM, Gainotti S, Mollo E, Taruscio D, Vittozzi L, Bianchi F.

Public Health Genomics. 2015;18(2):113-22. doi: 10.1159/000369993. Epub 2015 Feb 7.

PMID:
25677717
8.

Public health research on rare diseases.

Alonso V, Villaverde-Hueso A, Hens M, Morales-Piga A, Abaitua I, Posada de la Paz M.

Georgian Med News. 2011 Apr;(193):11-6.

PMID:
21617266
9.

Rare disease registries: a call to action.

Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, Winship I, McNeil J, Bittles AH.

Intern Med J. 2017 Sep;47(9):1075-1079. doi: 10.1111/imj.13528.

PMID:
28891182
11.

Tackling rare diseases at European level: why do we need a harmonized framework?

Taruscio D, Trama A, Stefanov R.

Folia Med (Plovdiv). 2007;49(1-2):59-67.

PMID:
18018471
12.

Data Quality in Rare Diseases Registries.

Kodra Y, Posada de la Paz M, Coi A, Santoro M, Bianchi F, Ahmed F, Rubinstein YR, Weinbach J, Taruscio D.

Adv Exp Med Biol. 2017;1031:149-164. doi: 10.1007/978-3-319-67144-4_8. Review.

PMID:
29214570
13.

The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.

Mora M, Angelini C, Bignami F, Bodin AM, Crimi M, Di Donato JH, Felice A, Jaeger C, Karcagi V, LeCam Y, Lynn S, Meznaric M, Moggio M, Monaco L, Politano L, de la Paz MP, Saker S, Schneiderat P, Ensini M, Garavaglia B, Gurwitz D, Johnson D, Muntoni F, Puymirat J, Reza M, Voit T, Baldo C, Bricarelli FD, Goldwurm S, Merla G, Pegoraro E, Renieri A, Zatloukal K, Filocamo M, Lochmüller H.

Eur J Hum Genet. 2015 Sep;23(9):1116-23. doi: 10.1038/ejhg.2014.272. Epub 2014 Dec 24.

14.

Uses of cancer registries for public health and clinical research in Europe: Results of the European Network of Cancer Registries survey among 161 population-based cancer registries during 2010-2012.

Siesling S, Louwman WJ, Kwast A, van den Hurk C, O'Callaghan M, Rosso S, Zanetti R, Storm H, Comber H, Steliarova-Foucher E, Coebergh JW.

Eur J Cancer. 2015 Jun;51(9):1039-49. doi: 10.1016/j.ejca.2014.07.016. Epub 2014 Aug 15.

PMID:
25131265
15.

Rare Disease Biospecimens and Patient Registries: Interoperability for Research Promotion, a European Example: EuroBioBank and SpainRDR-BioNER.

Rubinstein YR, Posada de la Paz M, Mora M.

Adv Exp Med Biol. 2017;1031:141-147. doi: 10.1007/978-3-319-67144-4_7.

PMID:
29214569
16.

eHealth Services for the European Reference Network on Rare Anaemias (eENERCA).

Antoniou Z, Schiza EC, Neokleous K, Angastiniotis M, Pattichis CS, Schizas CN.

Stud Health Technol Inform. 2015;213:153-6.

PMID:
26152979
17.

Quality assurance in melanoma care: The EU-MELACARE study.

Sommariva A, Forsea AM, Agius D, Ascierto PA, Bastiaannet E, Borgognoni L, Demetriou A, Garbe C, Gavric Z, Hocevar M, Innos K, Larønningen S, Louwman M, Robsahm TE, Rutkwoski P, van Akkooi A, Zorzi M, Pasquali S, van de Velde C, Rossi CR.

Eur J Surg Oncol. 2018 Nov;44(11):1773-1778. doi: 10.1016/j.ejso.2018.06.020. Epub 2018 Jul 3.

PMID:
30001892
18.

[A proposal for reforming psychologists' training in France and in the European Union].

Bouchard JP.

Encephale. 2009 Feb;35(1):18-24. doi: 10.1016/j.encep.2007.11.008. Epub 2008 Apr 2. French.

PMID:
19250989
19.

The European Union Policy in the Field of Rare Diseases.

Moliner AM, Waligora J.

Adv Exp Med Biol. 2017;1031:561-587. doi: 10.1007/978-3-319-67144-4_30.

PMID:
29214592
20.

Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet-a population-based study.

Gatta G, Capocaccia R, Botta L, Mallone S, De Angelis R, Ardanaz E, Comber H, Dimitrova N, Leinonen MK, Siesling S, van der Zwan JM, Van Eycken L, Visser O, Žakelj MP, Anderson LA, Bella F, Kaire I, Otter R, Stiller CA, Trama A; RARECAREnet working group.

Lancet Oncol. 2017 Aug;18(8):1022-1039. doi: 10.1016/S1470-2045(17)30445-X. Epub 2017 Jul 4. Erratum in: Lancet Oncol. 2017 Aug;18(8):e433.

PMID:
28687376

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