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1
The natural history of classic galactosemia: lessons from the GalNet registry
The natural history of classic galactosemia: lessons from the GalNet registry
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The natural history of classic galactosemia: lessons from the GalNet registry

Rubio-Gozalbo, M E ; Haskovic, M ; Bosch, A M ; Burnyte, B ; Coelho, A I ; Cassiman, D ; Couce, M L ; Dawson, C ; Demirbas, D ; Derks, T ; Eyskens, F ; Forga, M T ; Grunewald, S ; Häberle, J ; Hochuli, M ; Hubert, A ; Huidekoper, H H ; Janeiro, P ; Kotzka, J ; Knerr, I ; Labrune, P ; Landau, Y E ; Langendonk, J G ; Möslinger, D ; Müller-Wieland, D ; Murphy, E ; Õunap, K ; Ramadza, D ; Rivera, I A ; Scholl-Buergi, S ; Stepien, K M ; Thijs, A ; Tran, C ; Vara, R ; Visser, G ; Vos, R ; de Vries, M ; Waisbren, S E ; Welsink-Karssies, M M ; Wortmann, S B ; Gautschi, M ; Treacy, E P ; Berry, G T

Orphanet journal of rare diseases, 2019-04, Vol.14 (1), p.86-86, Article 86 [Periódico revisado por pares]

England: BioMed Central Ltd

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2
The Swedish cause of death register
The Swedish cause of death register
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The Swedish cause of death register

Brooke, Hannah Louise ; Talbäck, Mats ; Hörnblad, Jesper ; Johansson, Lars Age ; Ludvigsson, Jonas Filip ; Druid, Henrik ; Feychting, Maria ; Ljung, Rickard

European journal of epidemiology, 2017-09, Vol.32 (9), p.765-773 [Periódico revisado por pares]

Dordrecht: Springer

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3
Global mapping of institutional and hospital-based (Level II–IV) arthroplasty registries: a scoping review
Global mapping of institutional and hospital-based (Level II–IV) arthroplasty registries: a scoping review
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Global mapping of institutional and hospital-based (Level II–IV) arthroplasty registries: a scoping review

Zgouridou, Aikaterini ; Kenanidis, Eustathios ; Potoupnis, Michael ; Tsiridis, Eleftherios

European journal of orthopaedic surgery & traumatology, 2024-02, Vol.34 (2), p.1219-1251 [Periódico revisado por pares]

Paris: Springer Paris

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4
Rare disease registries: potential applications towards impact on development of new drug treatments
Rare disease registries: potential applications towards impact on development of new drug treatments
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Rare disease registries: potential applications towards impact on development of new drug treatments

Jansen-van der Weide, Marijke C ; Gaasterland, Charlotte M W ; Roes, Kit C B ; Pontes, Caridad ; Vives, Roser ; Sancho, Arantxa ; Nikolakopoulos, Stavros ; Vermeulen, Eric ; van der Lee, Johanna H

Orphanet journal of rare diseases, 2018-09, Vol.13 (1), p.154-154, Article 154 [Periódico revisado por pares]

England: BioMed Central Ltd

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5
The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage
The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage
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The Italian neuromuscular registry: a coordinated platform where patient organizations and clinicians collaborate for data collection and multiple usage

Ambrosini, Anna ; Calabrese, Daniela ; Avato, Francesco Maria ; Catania, Felice ; Cavaletti, Guido ; Pera, Maria Carmela ; Toscano, Antonio ; Vita, Giuseppe ; Monaco, Lucia ; Pareyson, Davide

Orphanet journal of rare diseases, 2018-10, Vol.13 (1), p.176-176, Article 176 [Periódico revisado por pares]

England: BioMed Central Ltd

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6
RegistrAME: the Spanish self-reported patient registry of spinal muscular atrophy
RegistrAME: the Spanish self-reported patient registry of spinal muscular atrophy
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RegistrAME: the Spanish self-reported patient registry of spinal muscular atrophy

Cattinari, Maria Grazia ; de Lemus, Mencía ; Tizzano, Eduardo

Orphanet journal of rare diseases, 2024-02, Vol.19 (1), p.76-76, Article 76 [Periódico revisado por pares]

England: BioMed Central Ltd

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7
EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
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EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders

Atalaia, Antonio ; Wandrei, Dagmar ; Lalout, Nawel ; Thompson, Rachel ; Tassoni, Adrian ; 't Hoen, Peter A C ; Athanasiou, Dimitrios ; Baker, Suzie-Ann ; Sakellariou, Paraskevi ; Paliouras, Georgios ; D'Angelo, Carla ; Horvath, Rita ; Mancuso, Michelangelo ; van der Beek, Nadine ; Kornblum, Cornelia ; Kirschner, Janbernd ; Pareyson, Davide ; Bassez, Guillaume ; Blacas, Laura ; Jacoupy, Maxime ; Eng, Catherine ; Lamy, François ; Plançon, Jean-Philippe ; Haberlova, Jana ; Brusse, Esther ; Hoeijmakers, Janneke G J ; de Visser, Marianne ; Claeys, Kristl G ; Paradas, Carmen ; Toscano, Antonio ; Silani, Vincenzo ; Gyenge, Melinda ; Reviers, Evy ; Hamroun, Dalil ; Vroom, Elisabeth ; Wilkinson, Mark D ; Lochmuller, Hanns ; Evangelista, Teresinha

Orphanet journal of rare diseases, 2024-02, Vol.19 (1), p.66-66, Article 66 [Periódico revisado por pares]

England: BioMed Central Ltd

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8
Global patterns of breast cancer incidence and mortality: A population‐based cancer registry data analysis from 2000 to 2020
Global patterns of breast cancer incidence and mortality: A population‐based cancer registry data analysis from 2000 to 2020
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Global patterns of breast cancer incidence and mortality: A population‐based cancer registry data analysis from 2000 to 2020

Lei, Shaoyuan ; Zheng, Rongshou ; Zhang, Siwei ; Wang, Shaoming ; Chen, Ru ; Sun, Kexin ; Zeng, Hongmei ; Zhou, Jiachen ; Wei, Wenqiang

Cancer Communications, 2021-11, Vol.41 (11), p.1183-1194 [Periódico revisado por pares]

United States: John Wiley & Sons, Inc

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9
Registers of the Swedish total population and their use in medical research
Registers of the Swedish total population and their use in medical research
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Registers of the Swedish total population and their use in medical research

Ludvigsson, Jonas F. ; Almqvist, Catarina ; Bonamy, Anna-Karin Edstedt ; Ljung, Rickard ; Michaëlsson, Karl ; Neovius, Martin ; Stephansson, Olof ; Ye, Weimin

European journal of epidemiology, 2016-02, Vol.31 (2), p.125-136 [Periódico revisado por pares]

Dordrecht: Springer

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10
Registry-derived stage (RD-Stage) for capturing cancer stage at diagnosis for endometrial cancer
Registry-derived stage (RD-Stage) for capturing cancer stage at diagnosis for endometrial cancer
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Registry-derived stage (RD-Stage) for capturing cancer stage at diagnosis for endometrial cancer

Evans, S M ; Ivanova, K ; Rome, R ; Cossio, D ; Pilgrim, Chc ; Zalcberg, J ; Antill, Y ; Blake, L ; Du Guesclin, A ; Garrett, A ; Giffard, D ; Golobic, N ; Moir, D ; Parikh, S ; Parisi, A ; Sanday, K ; Shadbolt, C ; Smith, M ; Te Marvelde, L ; Williams, K

BMC cancer, 2023-12, Vol.23 (1), p.1222-1222, Article 1222 [Periódico revisado por pares]

England: BioMed Central Ltd

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