Cargando…

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

BACKGROUND: The worldwide landscape of patient registries in the neuromuscular disease (NMD) field has significantly changed in the last 10 years, with the international TREAT-NMD network acting as strong driver. At the same time, the European Medicines Agency and the large federations of rare disea...

Descripción completa

Detalles Bibliográficos
Autores principales:	Ambrosini, Anna, Calabrese, Daniela, Avato, Francesco Maria, Catania, Felice, Cavaletti, Guido, Pera, Maria Carmela, Toscano, Antonio, Vita, Giuseppe, Monaco, Lucia, Pareyson, Davide
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2018
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172847/ https://www.ncbi.nlm.nih.gov/pubmed/30286784 http://dx.doi.org/10.1186/s13023-018-0918-z

Ejemplares similares

New therapies for spinal muscular atrophy: where we stand and what is next
por: Antonaci, Laura, et al.
Publicado: (2023)

A clinician's view of neuromuscular diseases
por: Brooke, Michael H., 1934-
Publicado: (1977)

Clinicians’ and Patients’ Perceptions and Use of the Word “Cured” in Cancer Care: An Italian Survey
por: Tralongo, Paolo, et al.
Publicado: (2023)

Where Do Introns Come From?
por: Catania, Francesco, et al.
Publicado: (2008)

Fondazione Telethon and Unione Italiana Lotta alla Distrofia Muscolare, a successful partnership for neuromuscular healthcare research of value for patients
por: Ambrosini, Anna, et al.
Publicado: (2021)

Using Italian: A Guide to Contemporary Usage
por: Kinder, J J, et al.
Publicado: (2004)

What prompts clinicians to start antibiotic treatment in COVID-19 patients? An Italian web survey helps us to understand where the doubts lie
por: Colaneri, Marta, et al.
Publicado: (2021)

Identification of the Volatile Components of Galium verum L. and Cruciata leavipes Opiz from the Western Italian Alps
por: Tava, Aldo, et al.
Publicado: (2020)

Statins Neuromuscular Adverse Effects
por: Attardo, Silvia, et al.
Publicado: (2022)

Antimicrobial Usage and -Resistance in Livestock: Where Should We Focus?
por: Magouras, Ioannis, et al.
Publicado: (2017)

Integrating patient-centeredness into online patient-clinician communication: a qualitative analysis of clinicians’ secure messaging usage
por: Alpert, Jordan M., et al.
Publicado: (2022)

Estimating the impact of COVID-19 pandemic on services provided by Italian Neuromuscular Centers: an Italian Association of Myology survey of the acute phase
por: Mauri, Eleonora, et al.
Publicado: (2020)

Digital health and Clinical Patient Management System (CPMS) platform utility for data sharing of neuromuscular patients: the Italian EURO-NMD experience
por: Fortunato, Fernanda, et al.
Publicado: (2023)

Anxiety and depression in Charcot-Marie-Tooth disease: data from the Italian CMT national registry
por: Bellofatto, Marta, et al.
Publicado: (2022)

Sleep Apnoea and AF: Where Do We Stand? Practical Advice for Clinicians
por: Mittal, Suneet, et al.
Publicado: (2021)

Clinicians’ interpretation of ventilation/perfusion lung scan reports: Where are we today?
por: Ismail, A, et al.
Publicado: (2023)

Old muscle, new tricks: a clinician perspective on sarcopenia and where to next
por: Schütze, Katie, et al.
Publicado: (2023)

Daily Life Benefits and Usage Characteristics of Dynamic Arm Supports in Subjects with Neuromuscular Disorders
por: Essers, Johannes, et al.
Publicado: (2020)

Cancer Immunotherapy: Where Next?
por: Bodmer, Walter, et al.
Publicado: (2023)

Effects of neuromuscular training on postural control of children with intellectual disability and developmental coordination disorders: Neuromuscular training and postural control
por: Balayi, Esmail, et al.
Publicado: (2022)

Analysis of bilateral muscle coordination for characterizing neuromuscular function in postural control
por: Promsri, Arunee
Publicado: (2022)

Decision-Making Time and Neuromuscular Coordination in Youth and Senior Soccer Goalkeepers
por: Piechota, Katarzyna, et al.
Publicado: (2023)

TTR-FAP: a single-center experience in Sicily, an Italian endemic area
por: Mazzeo, Anna, et al.
Publicado: (2015)

Microplastic Contamination in Snow from Western Italian Alps
por: Parolini, Marco, et al.
Publicado: (2021)

Performances in cerebellar and neuromuscular transmission tests are correlated in migraine with aura
por: Ambrosini, Anna, et al.
Publicado: (2008)

Italian Age of Acquisition Norms for a Large Set of Words (ItAoA)
por: Montefinese, Maria, et al.
Publicado: (2019)

Multimodal Strategy in Localized Merkel Cell Carcinoma: Where Are We and Where Are We Heading?
por: Ricco, Gianluca, et al.
Publicado: (2021)

Sick Note to Fit Note: one trust’s project to improve usage by hospital clinicians
por: Moran, Amy, et al.
Publicado: (2018)

Nutritional Psychiatry: Where to Next?
por: Jacka, Felice N.
Publicado: (2017)

Affective Norms for Italian Words in Older Adults: Age Differences in Ratings of Valence, Arousal and Dominance
por: Fairfield, Beth, et al.
Publicado: (2017)

hATTR Pathology: Nerve Biopsy Results from Italian Referral Centers
por: Luigetti, Marco, et al.
Publicado: (2020)

Migrants’ mental health recovery in Italian reception facilities
por: Caroppo, Emanuele, et al.
Publicado: (2023)

Nemo kinase interacts with Mad to coordinate synaptic growth at the Drosophila neuromuscular junction
por: Merino, Carlos, et al.
Publicado: (2009)

APP interacts with LRP4 and agrin to coordinate the development of the neuromuscular junction in mice
por: Choi, Hong Y, et al.
Publicado: (2013)

Neuromuscular training for children with developmental coordination disorder: A randomized controlled trial
por: Cheng, Yoyo T.Y., et al.
Publicado: (2019)

Validation of the Italian version of the pediatric CMT quality of life outcome measure
por: Moroni, Isabella, et al.
Publicado: (2022)

Find the Word! — But Where?: Maturana’s ‘Coordination’ and Sartre’s ‘Reflection’ around Naming
por: Imoto, Seiichi
Publicado: (2015)

Typology and categorization in developmental coordination disorder: Where does this leave us?
por: Green, Dido
Publicado: (2022)

Futile MITRA-FR and a positive COAPT trial: Where does the evidence leave the clinicians?
por: Arora, Garima, et al.
Publicado: (2018)

Chronic Pulmonary Aspergillosis: Notes for a Clinician in a Resource-Limited Setting Where There Is No Mycologist
por: Bongomin, Felix, et al.
Publicado: (2020)

Cannot write session to /tmp/vufind_sessions/sess_74qtaom1biickl15qc2otbe54f