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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 14, 2013 - Issue sup1
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Research Article

Infrastructure resources for clinical research in amyotrophic lateral sclerosis

Alexander V. ShermanNeurological Clinical Research Institute (NCRI), Massachusetts General Hospital, Boston, MassachusettsCorrespondence[email protected]
,
Amelie K. GubitzNational Institute of Neurological Disorders and Stroke (NINDS), NIH, Bethesda, Maryland, USA
,
Ammar Al-ChalabiDepartment of Clinical Neuroscience, Kings College London, Institute of Psychiatry, UK
,
Richard BedlackDivision of Neurology, School of Medicine, Duke Institute for Brain Sciences, Durham, North Carolina
,
James BerryDepartment of Neurology, Massachusetts General Hospital, Boston, Massachusetts
,
Robin ConwitNational Institute of Neurological Disorders and Stroke (NINDS), NIH, Bethesda, Maryland, USA
,
Brent T. HarrisDepartment of Neurology, Georgetown University Medical Center, Washington DC
,
D. Kevin HortonDivision of Toxicology and Human Health Sciences, Agency for Toxic Substances and Disease Registry, Atlanta, Georgia
,
Petra KaufmannNational Institute of Neurological Disorders and Stroke (NINDS), NIH, Bethesda, Maryland, USA
,
Melanie L. LeitnerPrize4Life, Cambridge, Massachusetts
,
Robert MillerThe Forbes Norris MDA/ALS Research Center, California Pacific Medical Center, San Francisco, California
,
Jeremy ShefnerDepartment of Neuroscience and Physiology, SUNY Upstate Medical University, Syracuse, New York
,
Jean Paul VonsattelDepartment of Pathology and Cell Biology, New York-Presbyterian Hospital, Columbia University Medical Center, New York, NY
&
Hiroshi MitsumotoEleanor and Lou Gehrig MDA/ALS Research Center, Department of Neurology, Columbia University Medical Center, New York, NY, USA
 show all
Pages 53-61 | Published online: 16 May 2013

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Hiroshi Mitsumoto, Grace Jang, Ikjae Lee, Zachary Simmons, Alexander V. Sherman, Daragh Heitzman, Eric Sorenson, Ken Cheung, Jinsy Andrews, Matthew Harms, Neil A. Shneider, Regina Santella, Sabrina Paganoni, Senda Ajroud-Driss, J. Americo M. Fernandes, Katherine M. Burke, Kelly Gwathmey, Ali A. Habib, Nicholas J. Maragakis, David Walk, Christina Fournier, Terry Heiman-Patterson, James Wymer, Frank Diaz, Stephen N. Scelsa, Lauren Elman, Angela Genge, Stephen A. Goutman, Ghazala Hayat, Omar Jawdat, Wendy S. Johnston, Nanette C. Joyce, Edward J. Kasarskis, Yaz Y. Kisanuki, Catherine Lomen-Hoerth, Michael T. Pulley, Jaimin S. Shah, Christen Shoesmith & Lorne Zinman. (2023) Primary lateral sclerosis natural history study – planning, designing, and early enrollment. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:5-6, pages 394-404.
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Michael E. Bozik, Hiroshi Mitsumoto, Benjamin R. Brooks, Stacy A. Rudnicki, Dan H. Moore, Bing Zhang, Albert Ludolph, Merit E. Cudkowicz, Leonard H. van den Berg, James Mather, Thomas Petzinger$suffix/text()$suffix/text() & Donald Archibald. (2014) A post hoc analysis of subgroup outcomes and creatinine in the phase III clinical trial (EMPOWER) of dexpramipexole in ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15:5-6, pages 406-413.
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Hiroshi Mitsumoto, Pam Factor-Litvak, Howard Andrews, Raymond R. Goetz, Leslie Andrews, Judith G. Rabkin, Martin McElhiney, Jeri Nieves, Regina M. Santella, Jennifer Murphy, Jonathan Hupf, Jess Singleton, David Merle, Mary Kilty, Daragh Heitzman, Richard S. Bedlack, Robert G. Miller, Jonathan S. Katz, Dallas Forshew, Richard J. Barohn, Eric J. Sorenson, Bjorn Oskarsson, J. Americo M. Fernandes Filho, Edward J. Kasarskis, Catherine Lomen-Hoerth, Tahseen Mozaffar, Yvonne D. Rollins, Sharon P. Nations, Andrea J. Swenson, Jeremy M. Shefner, Jinsy A. Andrews & Boguslawa A. Koczon-Jaremko. (2014) ALS Multicenter Cohort Study of Oxidative Stress (ALS COSMOS): Study methodology, recruitment, and baseline demographic and disease characteristics. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 15:3-4, pages 192-203.
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William M. Savage & Noam Y. Harel. (2022) Reaching a Tipping Point for Neurorehabilitation Research: Obstacles and Opportunities in Trial Design, Description, and Pooled Analysis. Neurorehabilitation and Neural Repair 36:10-11, pages 659-665.
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Ingridy Barbalho, Ricardo Valentim, Mário Dourado Júnior, Daniele Barros, Hércules Pedrosa Júnior, Felipe Fernandes, César Teixeira, Thaísa Lima, Jailton Paiva & Danilo Nagem. (2021) National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases. BMC Neurology 21:1.
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Anne-Lene Kjældgaard, Katrine Pilely, Karsten Skovgaard Olsen, Anne Øberg Lauritsen, Stephen Wørlich Pedersen, Kirsten Møller & Peter Garred. (2020) Amyotrophic lateral sclerosis and the innate immune system: protocol for establishing a biobank and statistical analysis plan. BMJ Open 10:8, pages e037753.
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Rangariroyashe Hannah Chipika, Eoin Finegan, Stacey Li Hi Shing, Orla Hardiman & Peter Bede. (2019) Tracking a Fast-Moving Disease: Longitudinal Markers, Monitoring, and Clinical Trial Endpoints in ALS. Frontiers in Neurology 10.
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F Biering-Sørensen, S Alai, K Anderson, S Charlifue, Y Chen, M DeVivo, A E Flanders, L Jones, N Kleitman, A Lans, V K Noonan, J Odenkirchen, J Steeves, K Tansey, E Widerström-Noga & L B Jakeman. (2015) Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project. Spinal Cord 53:4, pages 265-277.
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Neta Zach, David L. Ennist, Albert A. Taylor, Hagit Alon, Alexander Sherman, Robert Kueffner, Jason Walker, Ervin Sinani, Igor Katsovskiy, Merit Cudkowicz & Melanie L. Leitner. (2015) Being PRO-ACTive: What can a Clinical Trial Database Reveal About ALS?. Neurotherapeutics 12:2, pages 417-423.
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Nazem AtassiJames BerryAmy ShuiNeta ZachAlexander ShermanErvin SinaniJason WalkerIgor KatsovskiyDavid SchoenfeldMerit CudkowiczMelanie Leitner. (2014) The PRO-ACT database. Neurology 83:19, pages 1719-1725.
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Sabrina Paganoni, Merit Cudkowicz & James D Berry. (2014) Outcome measures in amyotrophic lateral sclerosis clinical trials. Clinical Investigation 4:7, pages 605-618.
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Tomer Fekete, Neta Zach, Lilianne R. Mujica-Parodi & Martin R. Turner. (2013) Multiple Kernel Learning Captures a Systems-Level Functional Connectivity Biomarker Signature in Amyotrophic Lateral Sclerosis. PLoS ONE 8:12, pages e85190.
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