Impact of rare diseases in oral health

Por Molina-García, Ana, Castellanos-Cosano, Lizett, Machuca-Portillo, Guillermo, Posada-de la Paz, Manuel
Publicado no Med Oral Patol Oral Cir Bucal (2016)

The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration

Por Taruscio, Domenica, Mollo, Emanuela, Gainotti, Sabina, Posada de la Paz, Manuel, Bianchi, Fabrizio, Vittozzi, Luciano
Publicado em 2014

A Nationwide Registry-Based Study on Mortality Due to Rare Congenital Anomalies

Por Alonso-Ferreira, Verónica, Sánchez-Díaz, Germán, Villaverde-Hueso, Ana, Posada de la Paz, Manuel, Bermejo-Sánchez, Eva
Publicado no Int J Environ Res Public Health (2018)

Geographic Analysis of Motor Neuron Disease Mortality and Heavy Metals Released to Rivers in Spain

Por Sánchez-Díaz, Germán, Escobar, Francisco, Badland, Hannah, Arias-Merino, Greta, Posada de la Paz, Manuel, Alonso-Ferreira, Verónica
Publicado no Int J Environ Res Public Health (2018)

Mortality Due to Cystic Fibrosis over a 36-Year Period in Spain: Time Trends and Geographic Variations

Por Villaverde-Hueso, Ana, Sánchez-Díaz, Germán, Molina-Cabrero, Francisco J., Gallego, Elisa, Posada de la Paz, Manuel, Alonso-Ferreira, Verónica
Publicado no Int J Environ Res Public Health (2019)

Tetralogy of Fallot in Spain: a nationwide registry-based mortality study across 36 years

Por Llamosas-Falcón, Laura, Bermejo-Sánchez, Eva, Sánchez-Díaz, Germán, Villaverde-Hueso, Ana, Posada de la Paz, Manuel, Alonso-Ferreira, Verónica
Publicado no Orphanet J Rare Dis (2019)

Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

Por Angelis, Aris, Kanavos, Panos, López-Bastida, Julio, Linertová, Renata, Oliva-Moreno, Juan, Serrano-Aguilar, Pedro, Posada-de-la-Paz, Manuel, Taruscio, Domenica, Schieppati, Arrigo, Iskrov, Georgi, Brodszky, Valentin, von der Schulenburg, Johann Matthias Graf, Chevreul, Karine, Persson, Ulf, Fattore, Giovanni
Publicado no Eur J Health Econ (2016)

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

Por Gainotti, Sabina, Torreri, Paola, Wang, Chiuhui Mary, Reihs, Robert, Mueller, Heimo, Heslop, Emma, Roos, Marco, Badowska, Dorota Mazena, de Paulis, Federico, Kodra, Yllka, Carta, Claudio, Martìn, Estrella Lopez, Miller, Vanessa Rangel, Filocamo, Mirella, Mora, Marina, Thompson, Mark, Rubinstein, Yaffa, Posada de la Paz, Manuel, Monaco, Lucia, Lochmüller, Hanns, Taruscio, Domenica
Publicado no Eur J Hum Genet (2018)

Recommendations for Improving the Quality of Rare Disease Registries

Por Kodra, Yllka, Weinbach, Jérôme, Posada-de-la-Paz, Manuel, Coi, Alessio, Lemonnier, S. Lydie, van Enckevort, David, Roos, Marco, Jacobsen, Annika, Cornet, Ronald, Ahmed, S. Faisal, Bros-Facer, Virginie, Popa, Veronica, Van Meel, Marieke, Renault, Daniel, von Gizycki, Rainald, Santoro, Michele, Landais, Paul, Torreri, Paola, Carta, Claudio, Mascalzoni, Deborah, Gainotti, Sabina, Lopez, Estrella, Ambrosini, Anna, Müller, Heimo, Reis, Robert, Bianchi, Fabrizio, Rubinstein, Yaffa R., Lochmüller, Hanns, Taruscio, Domenica
Publicado no Int J Environ Res Public Health (2018)