References
- Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update. The care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73:1218–26.
- Sherman A, Bowser R, Grasso D, Power B, Milligan C, Jaffa M, et al. Proposed BioRepository platform solution for the ALS research community. Amyotroph Lateral Scler. 2011;12:11–6.
- Otto M, Bowser R, Turner M, Berry J, Brettschneider J, Connor J, et al. Roadmap and standard operating procedures for biobanking and discovery of neurochemical markers in ALS. Amyotroph Lateral Scler. 2012;13:1–10.
- Gwinn K, Corriveau RA, Mitsumoto H, Bednarz K, Brown RH, Cudkowicz M, et al. Amyotrophic Lateral Sclerosis: An Emerging Era of Collaborative Gene Discovery. PloS One. 2007;1:1254.
- Dimos JT, Rodolfa KT, Niakan KK, Weisenthal LM, Mitsumoto H, Chung W, et al. Induced pluripotent stem cells generated from patients with ALS can be differentiated into motor neurons. Science. 2008;321:1218–21.
- Chaddah MR, Dickie BG, Lyall D, Marshall CJ, Sykes JB, Bruijn LI.Meeting report of the International Consortium of Stem Cell Networks’ Workshop Towards Clinical Trials Using Stem Cells for Amyotrophic Lateral Sclerosis/Motor Neuron Disease. Amyotroph Lateral Scler. 2011;12:315–7.
- http://www.alsconsortium.org
- http://www.alsrg.org
- http://www.wfnals.org
- http://www.alsuntangled.org
- http://www.coriell.org
- http://www.commondataelements.ninds.nih.gov
- http://www.ninds.nih.gov/news_and_events/proceedings/20101217-NEXT.htm
- http://www.neuroqol.org/default.aspx
- http://www.nihpromis.org
- http://www.biobankingsolutions.ac.uk/sample-data-access/collections/motor-neurone-disease/
- Shatunov A, Mok K, Newhouse S, Weale ME, Smith B, Vance C, et al. Chromosome 9p21 in sporadic amyotrophic lateral sclerosis in the UK and seven other countries: a genome-wide association study. Lancet Neurol. 2010;9:986–94.
- Beghi E. 127th ENMC International Workshop: implementation of a European registry of ALS. Neuromuscul Disord. 2006;16:46–53.
- Beghi E. Logroscino G, Chio A, Hardiman O, Mitchell D, Swingler R, et al. ;EURALS Consortium. The epidemiology of ALS and the role of population based registries. Biochimica et Biophysica Acta. 2006;176:1150–7.
- Chiò A, Mora G, Calvo A, Mazzini L, Bottacchi E, Mutani R; PARALS. Epidemiology of ALS in Italy: a 10-year prospective population based study. Neurology. 2009;72: 725–31.
- Beghi E, Millul A, Micheli A, Vitelli E, Logroscino G; SLALOM Group. Incidence of ALS in Lombardy, Italy. Neurology. 2007;68:141–5.
- Zoccolella S, Beghi E, Palagano G, Fraddosio A, Guerra V, Samarelli , et al. Riluzole and amyotrophic lateral sclerosis survival: a population based study in southern Italy. European Journal of Neurology. 2007;14:262–8.
- Bandettini di Poggio M, Sormani MP, Truffelli R, Mandich P, Origone P, Verdiani S, et al. ;LIGALS. Clinical epidemiology of ALS in Liguria, Italy. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:52–7.
- Beghi E, Logroscino G, Chio A, Hardiman O, Mitchell D, Swingler R, et al. The epidemiology of ALS and the role of population based registries. Mol Basis Dis. 2006; 1762: 1150–7.
- Beghi E, Logroscino G, Micheli A, Millul A, Perini M, Riva R, et al. Validity of hospital discharge diagnoses for the assessment of prevalence and incidence of amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2001;2: 99–104.
- Chio A, Mora G. Early symptom progression rate is related to ALS outcome: a prospective population based study − reply. Neurology. 2002;59:2013.
- Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman O. Amyotrophic lateral sclerosis mimic syndromes: a population based study. Arch Neurol. 2000;57: 109–13.
- Chancellor AM, Swingler RJ, Fraser H, Clarke JA, Warlow CP. Utility of Scottish Morbidity and Mortality Data for Epidemiologic Studies of Motor Neuron Disease. J Epidemiol Commun. 1993;47:116–20.
- Abhinav K, Stanton B, Johnston C, Hardstaff J, Orrell RW, Howard R, et al. Amyotrophic lateral sclerosis in south-east England: a population based study. The South-East England register for amyotrophic lateral sclerosis (SEALS Registry). Neuroepidemiology. 2007;29:44–8.
- Huisman MHB, de Jong SW, van Doormaal PTC, Weinreich SS, Schelhaas HJ, van der Kooi AJ, et al. Population based epidemiology of amyotrophic lateral sclerosis using capture-recapture methodology. J Neurol Neurosur. 2011;82:1165–70.
- Preux PM, Druet-Cabanac M, Couratier P, Debrock C, Truong T, Marcharia W, et al. Estimation of the amyotrophic lateral sclerosis incidence by capture-recapture method in the Limousin region of France. J Clin Epidemiol. 2000; 53:1025–9.
- Gil J, Funalot B, Verschueren A, Danel-Brunaud V, Camu W, Vandenberghe N, et al. Causes of death among French patients with amyotrophic lateral sclerosis: a prospective study. European Journal of Neurology: the official journal of the European Federation of Neurological Societies. 2008;15:1245–51.
- Fischer JS, Rudick RA, Cutter GR, Reingold SC. The Multiple Sclerosis Functional Composite Measure (MSFC): an integrated approach to MS clinical outcome assessment. National MS Society Clinical Outcomes Assessment Task Force. Mult Scler. 1999;5:244–50.
- http://www.prize4life.org
- http://www.alsdatabase.org