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The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies): development and
B G M van Engelen1, H van Veenendaal, P A van Doorn
1Neuromuscular Centre Nijmegen, Department of Neurology, Radboud University Nijmegen Medical Centre, 6500 HB Nijmegen, The Netherlands. b.vanengelen@neuro.umcn.nl
Abstract:
Each of the various neuromuscular diseases is rare. Consequently, solid epidemiological data are not available and it is often difficult to find sufficient patients for studies. For this reason, the Dutch neuromuscular database, CRAMP (Computer Registry of All Myopathies and Polyneuropathies), was developed in 2004 by the Dutch Neuromuscular Research Support Centre, to store information on patient characteristics and diagnoses (based on Rowland and McLeod's classification) in a uniform and easily retrievable manner. Care was taken to preserve data confidentiality. It is envisaged that CRAMP will prove particularly useful for studies in which multicentre collaboration is needed to recruit a sufficiently large number of patients. More than 10,000 patients with neuromuscular diseases (4,837 female, 5,476 male) have been registered since 2004, half of whom (n=5059) have peripheral nerve disorders.
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