200th ENMC International Workshop "European Reference Networks: Recommendations and Criteria in the Neuromuscular field", 18-20 October 2013, Naarden, the Netherlands

Neuromuscular Disorders

Volumn 24, Issue 6, 2014, Pages 537-545

  Evangelista, Teresinha ^a   van Engelen, Baziel ^b   Bushby, Kate ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

^b RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

ANEMIA; ARTICLE; EMPOWERMENT; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HEALTH CARE FACILITY; HEALTH CARE PLANNING; HEALTH CARE POLICY; HUMAN; MEDICAL RESEARCH; MEDICAL SOCIETY; METABOLIC DISORDER; NETHERLANDS; NEUROMUSCULAR DISEASE; PATIENT CARE; PRACTICE GUIDELINE; PRIORITY JOURNAL; PROFESSIONAL KNOWLEDGE; PUBLIC HEALTH; RARE DISEASE; NEUROMUSCULAR DISEASES;

HUMANS; NETHERLANDS; NEUROMUSCULAR DISEASES; PRACTICE GUIDELINES AS TOPIC;

EID: 84901001167     PISSN: 09608966     EISSN: 18732364     Source Type: Journal    
DOI: 10.1016/j.nmd.2014.03.005     Document Type: Article

References (11)

1. Cassiman J.J. EuroGentest - a European Network of Excellence aimed at harmonizing genetic testing services. Eur J Hum Genet 2005, 13:1103-1105.
2. Emery A.E.H. Population frequencies of inherited neuromuscular diseases - a world survey. Neuromuscular Disord 1991, 1(1):19-29.
3. Hughes M.I., Hicks E.M., Nevin N.C., Patterson V.H. The prevalence of inherited neuromuscular disease in Northern Ireland. Neuromuscular Disord 1996, 6(1):69-73.
4. HLG on Health Services and Medical Care. Available from: http://www.ec.europa.eu/health/ph_overview/co_operation/mobility/high_level_hsmc_en.htm.
5. Council Recommendation of 8 June 2009 on an action in the field of rare diseases. EN C 151/8 Off J Eur Union; 03.07.2009.
6. Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients' rights in cross-border healthcare. Off J Eur Union 2011; L 88/45. Available from: http://www.eur-lex.europa.eu.
7. EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States. Available from: (24.10.12). http://www.eucerd.eu.
8. Bladen C.L., et al. The TREAT-NMD Duchenne muscular dystrophy registries: conception, design and utilisation by industry and academia. Hum Mutat 2013, 34(11):1449-1457.
9. Bladen CL, et al. Mapping the differences in care for 5000 spinal muscular atrophy patients, a survey of 24 national registries in North America, Australasia and Europe. J Neurol 2013. doi: 10.1007/s00415-013-7154-1.
10. Vandervelde L., Van den Bergh P.Y., Goemans N., Thonnard J.L. ACTIVLIM: a Rasch-built measure of activity limitations in children and adults with neuromuscular disorders. Neuromuscular Disord 2007, 17(6):459-469.
11. Rodger S., et al. The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases. Orphanet J Rare Dis 2013, 8(1):171.