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 · 185 citations · Full text

Rare Disease Registries, Pathology, Disease Classification +16

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 · 103 citations

Rare Diseases, Dmd Registries, Duchenne Muscular Dystrophy +14

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 · 102 citations

Spine Care, Primary Care, Health Policy +9

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 · 44 citations · Full text