Table 1 Numbers of patients registered across countries as provided in April 2017
Name of Registry | Country | Year established | DM1 > 18 | DM1 < 18 | DM2 > 18 | DM2 < 18 |
|---|---|---|---|---|---|---|
National Registry for Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members | USA | 2000 | 1177 | 67 | 214 | 0 |
CRAMPS | Netherlands | 2001 | 452 | 0 | 30 | 0 |
Genemu** | Quebec, Canada | 2005 | N/A | N/A | N/A | N/A |
Belgian Neuromuscular Disease Registry | Belgium | 2008 | 493 | 34 | 16 | 2 |
DM-SCOPE | France | 2008 | 2203 | 255 | 107 | 0 |
Bulgarian Myotonic Dystrophy Registry | Bulgaria | 2009 | 76 | 2 | 6 | 0 |
Akhenaten, Serbian Registry for Myotonic Dystrophies | Serbia | 2009 | 335 | 0 | 86 | 0 |
Polish Registry of Neuromuscular Patients | Poland | 2010 | 246 | 7 | 125 | 0 |
ReaDY Myotonic Disorders | Czech Republic | 2011 | 184 | 5 | 286 | 2 |
Canadian Neuromuscular Disease Registry | Canada | 2011 | 188 | 21 | 38 | 0 |
New Zealand Neuromuscular Disease Registry | New Zealand | 2011 | 156 | 11 | 11 | 0 |
Myotonic Dystrophy Patient Registry for Germany and Switzerland | Germany and Switzerland | 2012 | 243 | 16 | 246 | 3 |
UK Myotonic Dystrophy Patient Registry | UK | 2012 | 429 | 45 | 16 | 0 |
China DM Registry | China | 2012 | 61 | 8 | 0 | 0 |
Spanish Registry of neuromuscular diseases | Spain | 2012 | 265 | 6 | 7 | 0 |
Egyptian neuromuscular registry | Egypt | 2013 | 4 | 6 | 5 | 3 |
The Italian registry for Myotonic Dystrophy | Italy | 2013 | 491 | 16 | 31 | 0 |
Myotonic Dystrophy Family Registry* | USA | 2013 | 1051* | 250* | ||
NMiS | Sweden | 2013 | 194 | 17 | 0 | 0 |
Registry of Muscular Dystrophy REMUDY | Japan | 2014 | 554 | 45 | 1 | 0 |
Ukrainian registry of muscular dystrophies | Ukraine | Not provided | 3 | 1 | 0 | 0 |
Australian Myotonic Dystrophy Registry*** | Australia | Data collection has not yet begun | 0 | 0 | 0 | 0 |
Totals | 9156 | 1485 | ||||
Total registered globally | 10,641 | |||||