157th ENMC International Workshop: Patient registries for rare, inherited muscular disorders 25–27 January 2008 Naarden, The Netherlands

Data collection flowchart: the patient with a diagnostic suspicion of NMD is referred to the clinician (1). During the consultation, in case of confirmation of the clinical diagnosis of a NMD, a consent form and a blood sample are taken, a medical certificate of consultation is drafted and the form with the mandatory items is compiled. If the genetic data is already available, not acquirable, or not requested, a more detailed form is directly sent to the database curator (2). The results of the genetic test and the mandatory items are forwarded to the database curator, who includes all the data into the database (3), and who assigns a unique identifier number to the patient (4). This number is dispatched to the clinician and to the patient (5), who via the unique identifier number is allowed to update regularly the personal and clinical data (6).