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11 results on '"Bartoloni, Franco"'

2. The ethical framework for performing research with rare inherited neurometabolic disease patients

Author

Giannuzzi, Viviana, Devlieger, Hugo, Margari, Lucia, Odlind, Viveca Lena, Ragab, Lamis, Bellettato, Cinzia Maria, D’Avanzo, Francesca, Lampe, Christina, Cassis, Linda, Cortès-Saladelafont, Elisenda, Cazorla, Ángels Garcia, Barić, Ivo, Cvitanović-Šojat, Ljerka, Fumić, Ksenija, Dali, Christine I, Bartoloni, Franco, Bonifazi, Fedele, Scarpa, Maurizio, and Ceci, Adriana

Published
2017
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3. Survey by TEDDY European Network of Excellence for Paediatric Clinical Research demonstrates potential for Europe‐wide trials

Author

Ruggieri, Lucia, primary, Bonifazi, Donato, additional, Landi, Annalisa, additional, Bonifazi, Fedele, additional, Bartoloni, Franco, additional, Costello, Mary, additional, Felisi, Maria Grazia, additional, Gasthuys, Elke, additional, Godo, Anila, additional, Martinon Torres, Federico, additional, Nadal, David, additional, Nuytinck, Lieve, additional, Rocchi, Francesca, additional, Turner, Mark, additional, and Ceci, Adriana, additional

Published
2019
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4. Survey by TEDDY European Network of Excellence for Paediatric Clinical Research demonstrates potential for Europe-wide trials.

Author

Ruggieri, Lucia, Bonifazi, Donato, Landi, Annalisa, Bonifazi, Fedele, Bartoloni, Franco, Costello, Mary, Felisi, Maria Grazia, Gasthuys, Elke, Godo, Anila, Martinon Torres, Federico, Nadal, David, Nuytinck, Lieve, Rocchi, Francesca, Turner, Mark, and Ceci, Adriana

Subjects
KEY performance indicators (Management), CLINICAL trials, EXCELLENCE, CURRICULUM, CROSS-sectional method
Abstract

Aim: The European Network of Excellence for Paediatric Clinical Research, known as the TEDDY Network, carried out a survey to determine the capacity and competence of paediatric centres to perform research studies.Methods: A cross-sectional, web-based pilot survey was conducted from October 2016 to April 2017 with paediatric clinical research centres in 11 countries: Albania, Austria, Belgium, Denmark, Iceland, Ireland, Italy, Norway, Spain, Switzerland and the United Kingdom. All were registered with the TEDDY Network database.Results: We approached 107 centres and 63 provided data on their experiences and expertise in paediatric clinical trials. Four groups of performance indicators were identified, referring to scientific experience, trial readiness, trial competence, regulatory issues, ethics and patients. Most centres were actively involved in paediatric clinical research: 53 centres (84.1%) had received funds for more than five paediatric studies in the last 5 years, and 42 (66.7%) had a specific clinical trial unit and dedicated study coordinators. We concluded that the European centres we studied had the capability and capacity to conduct paediatric trials, but there was still room for improvement, including enhanced collaboration.Conclusion: This pilot survey demonstrated that there is potential for performing paediatric trials across Europe, but improvements are possible. [ABSTRACT FROM AUTHOR]

Published
2020
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5. Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders Inherited metabolic diseases

Author

Cassis, Linda, Cortès Saladelafont, Elisenda, Molero Luis, Marta, Yubero, Delia, González, Maria Julieta, Herrero, Aida Ormazabal, Fons, Carme, Jou, Cristina, Sierra, Cristina, Castejon Ponce, Esperanza, Ramos, Federico, Armstrong, Judith, O'Callaghan, M. Mar, Casado, Mercedes, Montero, Raquel, Olivas, Silvia Maria Meavilla, Artuch, Rafael, Barić, Ivo, Bartoloni, Franco, Bellettato, Cinzia Maria, Bonifazi, Fedele, Ceci, Adriana, Cvitanović Šojat, Ljerka, Dali, Christine I, D'Avanzo, Francesca, Fumic, Ksenija, Giannuzzi, Viviana, Lampe, Christina, Scarpa, Maurizio, and Garcia Cazorla, Ángels

Subjects
Inherited neurometabolic disorders, Medicine (all), AGREE II, Guidelines, Inborn errors of metabolism, Recommendations, Genetics (clinical), Pharmacology (medical)
Published
2015

6. Erratum to: Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders

Author

Cassis, Linda, primary, Cortès-Saladelafont, Elisenda, additional, Molero-Luis, Marta, additional, Yubero, Delia, additional, González, Maria Julieta, additional, Ormazábal, Aida, additional, Fons, Carme, additional, Jou, Cristina, additional, Sierra, Cristina, additional, Ponce, Esperanza Castejon, additional, Ramos, Federico, additional, Armstrong, Judith, additional, O’Callaghan, M. Mar, additional, Casado, Mercedes, additional, Montero, Raquel, additional, Meavilla-Olivas, Silvia, additional, Artuch, Rafael, additional, Barić, Ivo, additional, Bartoloni, Franco, additional, Bellettato, Cinzia Maria, additional, Bonifazi, Fedele, additional, Ceci, Adriana, additional, Cvitanović-Šojat, Ljerka, additional, Dali, Christine I., additional, D’Avanzo, Francesca, additional, Fumic, Ksenija, additional, Giannuzzi, Viviana, additional, Lampe, Christina, additional, Scarpa, Maurizio, additional, and Garcia-Cazorla, Ángels, additional

Published
2016
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7. The Italian multiregional thalassemia registry: Centers characteristics, services, and patients’ population

Author

Conte, Rosa, primary, Ruggieri, Lucia, additional, Gambino, Arianna, additional, Bartoloni, Franco, additional, Baiardi, Paola, additional, Bonifazi, Donato, additional, Bonifazi, Fedele, additional, Felisi, Mariagrazia, additional, Giannuzzi, Viviana, additional, Padula, Rosa, additional, Pepe, Alessia, additional, Putti, Maria Caterina, additional, Del Vecchio, Giovanni Carlo, additional, Maggio, Aurelio, additional, Filosa, Aldo, additional, Iacono, Angela, additional, Mangiarini, Laura, additional, and Ceci, Adriana, additional

Published
2016
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8. Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders

Author

Cassis, Linda, primary, Cortès-Saladelafont, Elisenda, additional, Molero-Luis, Marta, additional, Yubero, Delia, additional, González, Maria Julieta, additional, Ormazábal, Aida, additional, Fons, Carme, additional, Jou, Cristina, additional, Sierra, Cristina, additional, Castejon Ponce, Esperanza, additional, Ramos, Federico, additional, Armstrong, Judith, additional, O’Callaghan, M. Mar, additional, Casado, Mercedes, additional, Montero, Raquel, additional, Meavilla-Olivas, Silvia, additional, Artuch, Rafael, additional, Barić, Ivo, additional, Bartoloni, Franco, additional, Bellettato, Cinzia Maria, additional, Bonifazi, Fedele, additional, Ceci, Adriana, additional, Cvitanović-Šojat, Ljerka, additional, Dali, Christine I, additional, D’Avanzo, Francesca, additional, Fumic, Ksenija, additional, Giannuzzi, Viviana, additional, Lampe, Christina, additional, Scarpa, Maurizio, additional, and Garcia-Cazorla, Ángels, additional

Published
2015
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