La enfermedad de Huntington en la Comunitat Valenciana

por Páramo-Rodríguez, Lucía, Moreno-Marro, Sandra, Guardiola-Vilarroig, Sandra, Zurriaga, Óscar, Cavero-Carbonell, Clara
Publicado 2023

Rare Diseases: Needs and Impact for Patients and Families: A Cross-Sectional Study in the Valencian Region, Spain

por Gimenez-Lozano, Cristina, Páramo-Rodríguez, Lucía, Cavero-Carbonell, Clara, Corpas-Burgos, Francisca, López-Maside, Aurora, Guardiola-Vilarroig, Sandra, Zurriaga, Oscar
Publicado 2022

The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study

por Holm, Kristina Garne, Neville, Amanda Julie, Pierini, Anna, Latos Bielenska, Anna, Jamry-Dziurla, Anna, Cavero-Carbonell, Clara, Garne, Ester, Clemensen, Jane
Publicado 2021

Oesophageal Atresia: Prevalence in the Valencian Region (Spain) and Associated Anomalies

por Agurto-Ramírez, Adriana, García-Villodre, Laura, Ruiz-Palacio, Ana, Arribas-Díaz, Berta, Barrachina-Bonet, Laia, Páramo-Rodríguez, Lucía, Zurriaga, Óscar, Cavero-Carbonell, Clara
Publicado 2023

The interoperability between the Spanish version of the International Classification of Diseases and ORPHAcodes: towards better identification of rare diseases

por Rico, Juan, Echevarría-González de Garibay, Luis Javier, García-López, María, Guardiola-Vilarroig, Sandra, Maceda-Roldán, Luis Alberto, Zurriaga, Óscar, Cavero-Carbonell, Clara
Publicado 2021

Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeopl...

por Sinclair, Marlene, McCullough, Julie EM, Elliott, David, Latos-Bielenska, Anna, Braz, Paula, Cavero-Carbonell, Clara, Jamry-Dziurla, Anna, João Santos, Ana, Páramo-Rodríguez, Lucía
Publicado 2019

Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study

por Sinclair, Marlene, McCullough, Julie E M, Elliott, David, Braz, Paula, Cavero-Carbonell, Clara, Dornan, Lesley, Jamry-Dziurla, Anna, João Santos, Ana, Latos-Bieleńska, Anna, Machado, Ausenda, Páramo-Rodríguez, Lucía
Publicado 2021

Prescriptions for insulin and insulin analogues in children with and without major congenital anomalies: a data linkage cohort study across six European regions

por Given, Joanne, Morris, Joan K., Garne, Ester, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Gissler, Mika, Gorini, Francesca, Heino, Anna, Jordan, Sue, Neville, Amanda J., Pierini, Anna, Scanlon, Ieuan, Tan, Joachim, Urhoj, Stine K., Loane, Maria
Publicado 2023

Survival, hospitalisation and surgery in children born with Pierre Robin sequence: a European population-based cohort study

por Santoro, Michele, Garne, Ester, Coi, Alessio, Tan, Joachim, Loane, Maria, Ballardini, Elisa, Cavero-Carbonell, Clara, de Walle, Hermien EK, Gatt, Miriam, Gissler, Mika, Jordan, Sue, Klungsøyr, Kari, Lelong, Natalie, Urhoj, Stine Kjaer, Wellesley, Diana G, Morris, Joan K
Publicado 2023

ORPHAcodes use for the coding of rare diseases: comparison of the accuracy and cross country comparability

por Mazzucato, Monica, Pozza, Laura Visonà Dalla, Facchin, Paola, Angin, Cèline, Agius, Francis, Cavero-Carbonell, Clara, Corrochano, Virginia, Hanusova, Katerina, Kirch, Kurt, Lambert, Deborah, Lucano, Caterina, Maiella, Sylvie, Panzaru, Monica, Rusu, Cristina, Weber, Stefanie, Zurriaga, Oscar, Zvolsky, Miroslav, Rath, Ana
Publicado 2023

Antiasthmatic prescriptions in children with and without congenital anomalies: a population-based study

por Divin, Natalie, Given, Joanne Emma, Tan, Joachim, Astolfi, Gianni, Ballardini, Elisa, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Susan, Pierini, Anna, Scanlon, Ieuan, Urhøj, Stine Kjær, Morris, Joan K, Loane, Maria
Publicado 2023

Preterm birth and prescriptions for cardiovascular, antiseizure, antibiotics and antiasthmatic medication in children up to 10 years of age: a population-based data linkage cohort...

por Damkjaer, Mads, Loane, Maria, Urhøj, Stine Kjær, Ballardini, Elisa, Cavero- Carbonell, Clara, Coi, Alessio, García-Villodre, Laura, Given, Joanne Emma, Gissler, Mika, Heino, Anna, Jordan, Susan, Neville, Amanda, Pierini, Anna, Tan, Joachim, Scanlon, Ieuan, Garne, Ester, Morris, Joan K
Publicado 2022

Hospital Length of Stay and Surgery among European Children with Rare Structural Congenital Anomalies—A Population-Based Data Linkage Study

por Garne, Ester, Tan, Joachim, Damkjaer, Mads, Ballardini, Elisa, Cavero-Carbonell, Clara, Coi, Alessio, Garcia-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Loane, Maria, Neville, Amanda J., Pierini, Anna, Rissmann, Anke, Tucker, David, Urhoj, Stine Kjaer, Morris, Joan
Publicado 2023

Prescription of cardiovascular medication in children with congenital heart defects across six European Regions from 2000 to 2014: data from the EUROlinkCAT population-based cohort...

por Damkjaer, Mads, Urhoj, Stine Kjaer, Tan, Joachim, Briggs, Gillian, Loane, Maria, Given, Joanne Emma, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Neville, Amanda J, Heino, Anna, Kiuru-Kuhlefelt, Sonja, Jordan, Susan, Scanlon, Ieuan, Pierini, Anna, Puccini, Aurora, Garne, Ester, Morris, Joan K
Publicado 2022

Gastrostomy and congenital anomalies: a European population-based study

por Garne, Ester, Tan, Joachim, Loane, Maria, Baldacci, Silvia, Ballardini, Elisa, Brigden, Joanne, Cavero-Carbonell, Clara, García-Villodre, Laura, Gissler, Mika, Given, Joanne, Heino, Anna, Jordan, Sue, Limb, Elizabeth, Neville, Amanda Julie, Rissmann, Anke, Santoro, Michele, Scanlon, leuan, Urhoj, Stine Kjaer, Wellesley, Diana G, Morris, Joan
Publicado 2022

Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

por Marcus, Elena, Latos-Bielenska, Anna, Jamry-Dziurla, Anna, Barišić, Ingeborg, Cavero-Carbonell, Clara, Den Hond, Elly, Garne, Ester, Genard, Lucas, Santos, Ana João, Lutke, LRenée, Matias Dias, Carlos, Neergaard Pedersen, Christina, Neville, Amanda J., Niemann, Annika, Odak, Ljubica, Pierini, Anna, Rico, Juan, Rissmann, Anke, Rankin, Judith, Morris, Joan K.
Publicado 2022

Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

por Claridge, Hugh, Tan, Joachim, Loane, Maria, Garne, Ester, Barisic, Ingeborg, Cavero-Carbonell, Clara, Dias, Carlos, Gatt, Miriam, Jordan, Susan, Khoshnood, Babak, Kiuru-Kuhlefelt, Sonja, Klungsoyr, Kari, Mokoroa Carollo, Olatz, Nelen, Vera, Neville, Amanda J, Pierini, Anna, Randrianaivo, Hanitra, Rissmann, Anke, Tucker, David, de Walle, Hermien, Wertelecki, Wladimir, Morris, Joan K
Publicado 2023

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

por Latos-Bieleńska, Anna, Marcus, Elena, Jamry-Dziurla, Anna, Rankin, Judith, Barisic, Ingeborg, Cavero- Carbonell, Clara, Den Hond, Elly, Garne, Ester, Genard, Lucas, João Santos, Ana, Lutke, L Renée, Matias Dias, Carlos, Neergaard Pedersen, Christina, Neville, Amanda, Niemann, Annika, Odak, Ljubica, Páramo-Rodríguez, Lucía, Pierini, Anna, Rissmann, Anke, Morris, Joan K
Publicado 2022

Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessmen...

por Loane, Maria, Given, Joanne E., Tan, Joachim, Barišić, Ingeborg, Barrachina-Bonet, Laia, Cavero-Carbonell, Clara, Coi, Alessio, Densem, James, Garne, Ester, Gissler, Mika, Heino, Anna, Jordan, Sue, Lutke, Renee, Neville, Amanda J., Odak, Ljubica, Puccini, Aurora, Santoro, Michele, Scanlon, Ieuan, Urhoj, Stine K., de Walle, Hermien E. K., Wellesley, Diana, Morris, Joan K.
Publicado 2023

Beta-Blocker Use in Pregnancy and Risk of Specific Congenital Anomalies: A European Case-Malformed Control Study

por Bergman, Jorieke E. H., Lutke, L. Renée, Gans, Rijk O. B., Addor, Marie-Claude, Barisic, Ingeborg, Cavero-Carbonell, Clara, Garne, Ester, Gatt, Miriam, Klungsoyr, Kari, Lelong, Nathalie, Lynch, Catherine, Mokoroa, Olatz, Nelen, Vera, Neville, Amanda J., Pierini, Anna, Randrianaivo, Hanitra, Rissmann, Anke, Tucker, David, Wiesel, Awi, Dolk, Helen, Loane, Maria, Bakker, Marian K.
Publicado 2017