Infrastructure resources for clinical research in amyotrophic lateral sclerosis

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Volumn 14, Issue SUPPL1, 2013, Pages 53-61

  Sherman, Alexander V ^a   Gubitz, Amelie K ^b   Al Chalabi, Ammar ^c   Bedlack, Richard ^d   Berry, James ^a   Conwit, Robin ^b   Harris, Brent T ^e   Horton, D Kevin ^f   Kaufmann, Petra ^b   Leitner, Melanie L ^g   Miller, Robert ^h   Shefner, Jeremy ⁱ   Vonsattel, Jean Paul ^j   Mitsumoto, Hiroshi ^j  

^a MASSACHUSETTS GENERAL HOSPITAL   (United States)

^b NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE   (United States)

^c KING'S COLLEGE LONDON   (United Kingdom)

^d DUKE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^e GEORGETOWN UNIVERSITY MEDICAL CENTER   (United States)

^f AGENCY FOR TOXIC SUBSTANCES AND DISEASE REGISTRY   (United States)

^g Prize4Life   (United States)

^h CALIFORNIA PACIFIC MEDICAL CENTER   (United States)

ⁱ State University of New York Upstate Medical University: College of Medicine   (United States)

^j NewYork Presbyterian Hospital   (United States)

more..

Author keywords

Amyotrophic lateral sclerosis (ALS); Clinical research infrastructure; Europe; Motor neuron disease (MND); North America

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CLINICAL DATA REPOSITORY; CLINICAL RESEARCH; CLINICAL STUDY; COMPUTERIZED ADAPTIVE TESTING; DEGENERATIVE DISEASE; DISEASE CONTROL; DISEASE REGISTRY; ELECTROMYOGRAPHY; FINANCIAL MANAGEMENT; GOVERNMENT; HEALTH CARE FACILITY; HEALTH CARE PERSONNEL; HUMAN; IMPEDANCE; MOTOR NEURON DISEASE; PARALYSIS; PATHOGENESIS; PHASE 2 CLINICAL TRIAL (TOPIC); PHENOTYPE; PRIORITY JOURNAL; PROPHYLAXIS; QUALITY OF LIFE; RISK FACTOR; EUROPE; FACTUAL DATABASE; HEALTH CARE PLANNING; MEDICAL RESEARCH; NORTH AMERICA; PROCEDURES; STATISTICS AND NUMERICAL DATA;

AMYOTROPHIC LATERAL SCLEROSIS; BIOMEDICAL RESEARCH; DATABASES, FACTUAL; EUROPE; HEALTH RESOURCES; HUMANS; NORTH AMERICA;

EID: 84877861023     PISSN: 21678421     EISSN: 21679223     Source Type: Journal    
DOI: 10.3109/21678421.2013.779058     Document Type: Article

References (35)

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. http://www.alsconsortium.org
8. http://www.alsrg.org
9. http://www.wfnals.org
10. http://www.alsuntangled.org
11. http://www.coriell.org
12. http://www.commondataelements.ninds.nih.gov
13. http://www.ninds.nih.gov/news-and-events/proceedings/20101217-NEXT.htm
14. http://www.neuroqol.org/default.aspx
15. http://www.nihpromis.org
16. http://www.biobankingsolutions.ac.uk/sample-data-access/collections/ motor-neurone-disease/
17. 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.
18. Beghi E. 127th ENMC International Workshop: implementation of a European registry of ALS. Neuromuscul Disord. 2006; 16: 46-53.
19. 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.
20. Chi ò 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.
21. Beghi E, Millul A, Micheli A, Vitelli E, Logroscino G; SLALOM Group. Incidence of ALS in Lombardy, Italy. Neurology. 2007; 68: 141-5.
22. 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.
23. 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.
24. 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.
25. 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.
26. Chio A, Mora G. Early symptom progression rate is related to ALS outcome: a prospective population based study-reply. Neurology. 2002; 59: 2013.
27. 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.
28. 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.
29. 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.
30. 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.
31. 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.
32. 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 offi cial journal of the European Federation of Neurological Societies. 2008; 15: 1245-51.
33. 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.
34. http://www.prize4life.org
35. http://www.alsdatabase.org