Anna Ambrosini

Recommendations for Improving the Quality of Rare Disease Registries

Yllka Kodra, Jérôme Weinbach, Manuel Posada de la Paz et al. · International Journal of Environmental Research and Public Health · 2018 · 199 citations · Full text

Computing, Biomedical Informatics, Health Informatics +15

Mapping the differences in care for 5,000 Spinal Muscular Atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

Catherine L. Bladen, Rachel Thompson, J. Jackson et al. · Journal of Neurology · 2013 · 109 citations

Public Affairs, Health Sciences, Health Services Research +4

The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

Catherine L. Bladen, Karen Rafferty, Volker Straub et al. · Human Mutation · 2013 · 108 citations

Medicine, Neurology, Good Clinical Practice +13

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

Anna Ambrosini, Daniela Calabrese, Francesco Maria Avato et al. · Orphanet Journal of Rare Diseases · 2018 · 48 citations · Full text

Health Professions, Biomedical Informatics, Neurology +8

“Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease

Anna Ambrosini, Rosaline C. M. Quinlivan, Valeria Sansone et al. · Orphanet Journal of Rare Diseases · 2019 · 20 citations · Full text

Medicine, Health Policy, Neurology +13