Belgian neuromuscular diseases registry, information brochure for patients, 2020 | ORKG Ask

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Contains fulltext : 232841.pdf (Publisher’s version ) (Open Access)While rare dise...

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Ambrosini, Anna
Calabrese, Daniela
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Cavaletti, Guido
Pera, Maria Carmela
Toscano, Antonio
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Monaco, Lucia
Pareyson, Davide

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Background: The worldwide landscape of patient registries in the neuromuscular disease (NMD) field h...

The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies): development and preliminary data.

Engelen, B.G.M. van
Veenendaal, H. van
Doorn, P.A. van
Faber, C.G.
Hoeven, J.H. van
Janssen, N.G.
Notermans, N.C.
Schaik, I.N. van
Visser, L.H.
Verschuuren, J.J.

January 2007

Contains fulltext : 51646.pdf (publisher's version ) (Closed access)Each of the va...

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van Engelen, B. G. M.
van Veenendaal, H.
van Doorn, P. A.
van der Hoeven, J. H.
Janssen, N. G.
Notermans, N. C.
van Schaik, I. N.
Visser, L. H.
Verschuuren, J. J. G. M.

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Each of the various neuromuscular diseases is rare. Consequently, solid epidemiological data are not...

E-Health Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress: Nice, France, March 22-23, 2019

Pini J.
Siciliano G.
Lahaut P.
Braun S.
Segovia-Kueny S.
Kole A.
Hernando I.
Selb J.
Schirinzi E.
Duong T.
Hogrel J. -Y.
Olmedo J. J. S.
Vissing J.
Servais L.
Vincent-Genod D.
Vuillerot C.
Bannwarth S.
Eggenspieler D.
Vicart S.
Diaz-Manera J.
Lochmuller H.
Sacconi S.
Cavalli C.
Puma A.
Villa L.
Andr E.

January 2021

By definition, neuromuscular diseases are rare and fluctuating in terms of symptoms; patients are of...

E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress: Nice, France, March 22-23, 2019.

Pini, Jonathan
Siciliano, Gabriele
Lahaut, Pauline
Braun, Serge
Segovia-Kueny, Sandrine
Kole, Anna
Hérnando, Ines
Selb, Julij
Schirinzi, Erika
Duong, Tina
Hogrel, Jean-Yves
Olmedo, José Javier Serrano
Vissing, John
Servais, Laurent
Vincent-Genod, Dominique
Vuillerot, Carole
Bannwarth, Sylvie
Eggenspieler, Damien
Vicart, Savine
Diaz-Manera, Jordi
Lochmüller, Hanns
Sacconi, Sabrina

January 2021

peer reviewedBy definition, neuromuscular diseases are rare and fluctuating in terms of symptoms; pa...

The European Reference Network for Rare Neurological Diseases

Reinhard, C.
Bachoud-Lévi, A.C.
Bäumer, T.
Bertini, E.
Brunelle, A.
Buizer, A.I.
Federico, A.
Gasser, T.
Groeschel, S.
Hermanns, S.
Klockgether, T.
Krägeloh-Mann, I.
Landwehrmeyer, G.B.
Leber, I.
Macaya, A.
Mariotti, C.
Meissner, W.G.
Molnar, M.J.
Nonnekes, J.H.
Escobar, J.D. Ortigoza
Dueñas, B. Pérez
Linton, L. Renna
Schöls, L.
Schuele, R.
Tijssen, Marina A. J.
Vandenberghe, R.
Volkmer, A.
Wolf, N.I.
Graessner, H.

January 2020

Contains fulltext : 232841.pdf (Publisher’s version ) (Open Access)While rare dise...

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

Ambrosini, Anna
Calabrese, Daniela
Avato, Francesco Maria
Catania, Felice
Cavaletti, Guido
Pera, Maria Carmela
Toscano, Antonio
Vita, Giuseppe
Monaco, Lucia
Pareyson, Davide

October 2018

Background: The worldwide landscape of patient registries in the neuromuscular disease (NMD) field h...

The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies): development and preliminary data.

Engelen, B.G.M. van
Veenendaal, H. van
Doorn, P.A. van
Faber, C.G.
Hoeven, J.H. van
Janssen, N.G.
Notermans, N.C.
Schaik, I.N. van
Visser, L.H.
Verschuuren, J.J.

January 2007

Contains fulltext : 51646.pdf (publisher's version ) (Closed access)Each of the va...

The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies):Development and preliminary data

van Engelen, B. G. M.
van Veenendaal, H.
van Doorn, P. A.
van der Hoeven, J. H.
Janssen, N. G.
Notermans, N. C.
van Schaik, I. N.
Visser, L. H.
Verschuuren, J. J. G. M.

January 2007

Each of the various neuromuscular diseases is rare. Consequently, solid epidemiological data are not...