The NEALS primary lateral sclerosis registry.

Adult Amyotrophic Lateral Sclerosis / diagnosis Humans Motor Neuron Disease / epidemiology Neurodegenerative Diseases Registries Retrospective Studies
PLS disability outcome measures survival upper motor neurons

Journal

Amyotrophic lateral sclerosis & frontotemporal degeneration
ISSN: 2167-9223
Titre abrégé: Amyotroph Lateral Scler Frontotemporal Degener
Pays: England
ID NLM: 101587185

Informations de publication

Date de publication:
11 2020
Historique:
pubmed: 12 9 2020
medline: 1 9 2021
entrez: 11 9 2020
Statut: ppublish

Résumé

Primary lateral sclerosis (PLS) is a neurodegenerative disease characterized by progressive upper motor neuron dysfunction. Because PLS patients represent only 1 to 4% of patients with adult motor neuron diseases, there is limited information about the disease's natural history. The objective of this study was to establish a large multicenter retrospective longitudinal registry of PLS patients seen at Northeast ALS Consortium (NEALS) sites to better characterize the natural progression of PLS.

Sections du résumé

BACKGROUND AND OBJECTIVE
Primary lateral sclerosis (PLS) is a neurodegenerative disease characterized by progressive upper motor neuron dysfunction. Because PLS patients represent only 1 to 4% of patients with adult motor neuron diseases, there is limited information about the disease's natural history. The objective of this study was to establish a large multicenter retrospective longitudinal registry of PLS patients seen at Northeast ALS Consortium (NEALS) sites to better characterize the natural progression of PLS.

Identifiants

DOI: 10.1080/21678421.2020.1804591 PMID: 32915077
pubmed: 32915077
doi: 10.1080/21678421.2020.1804591
doi:

Types de publication

Journal Article Multicenter Study Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

74-81

Auteurs

Sabrina Paganoni (S)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Fabiola De Marchi (F)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

James Chan (J)

Department of Biostatistics, Harvard Medical School, Massachusetts General Hospital, Boston, MA, USA.

Sara K Thrower (SK)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Nathan P Staff (NP)

Mayo Clinic, Rochester, MN, USA.
ORCID: 0000-0001-6760-3859

Neil Datta (N)

Hospital for Special Care, New Britain, CT/University of Connecticut School of Medicine, Farmington, CT, USA.

Yaz Y Kisanuki (YY)

Department of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA.

Vivian Drory (V)

Tel Aviv Sourasky Medical Center, Tel Aviv-Yafo, Israel.

Christina Fournier (C)

Department of Neurology, Emory University Hospital, Atlanta, GA, USA.

Erik P Pioro (EP)

Neuromuscular Center, Department of Neurology, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.

Stephen A Goutman (SA)

Neurology, University of Michigan, Ann Arbor, MI, USA.

Nazem Atassi (N)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Maryangel Jeon (M)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Sarah Caldwell (S)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Timothy Mcdonough (T)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Caroline Gentile (C)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Jianing Liu (J)

Department of Neurology, Sean M. Healey & AMG Center for ALS at Mass General, Massachusetts General Hospital, Boston, MA, USA.

Michelle Turner (M)

Mayo Clinic, Rochester, MN, USA.

Carol Denny (C)

Mayo Clinic, Rochester, MN, USA.

Kevin Felice (K)

Hospital for Special Care, New Britain, CT/University of Connecticut School of Medicine, Farmington, CT, USA.

Misty Green (M)

Department of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA.

Stephanie Scarberry (S)

Department of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA.

Saad Abu-Saleh (S)

Tel Aviv Sourasky Medical Center, Tel Aviv-Yafo, Israel.

Beatrice Nefussy (B)

Tel Aviv Sourasky Medical Center, Tel Aviv-Yafo, Israel.

Debbie Hastings (D)

Neuromuscular Center, Department of Neurology, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.

Sangri Kim (S)

Neurology, University of Michigan, Ann Arbor, MI, USA.

Blake Swihart (B)

Neurology, University of Michigan, Ann Arbor, MI, USA.

Ximena Arcila-Londono (X)

Henry Ford Health System, Detroit, MI, USA.

Daniel S Newman (DS)

Henry Ford Health System, Detroit, MI, USA.

Michael Silverman (M)

Henry Ford Health System, Detroit, MI, USA.

Angela Genge (A)

Montreal Neurological Institute & Hospital, Montreal, Canada.

Kristiana Salmon (K)

Montreal Neurological Institute & Hospital, Montreal, Canada.

Lauren Elman (L)

Department of Neurology, University of Pennsylvania Medical Center, Philadelphia, PA, USA.

Leo Mccluskey (L)

Department of Neurology, University of Pennsylvania Medical Center, Philadelphia, PA, USA.

Kelly Almasy (K)

Department of Neurology, University of Pennsylvania Medical Center, Philadelphia, PA, USA.

Marc Gotkine (M)

Department of Neurology, The Agnes Ginges Center for Human Neurogenetics, Hadassah-Hebrew University Medical Center, Jerusalem, Israel.

Kimberly Goslin (K)

Providence ALS Center, Portland, OR, USA.

Arlena Cummings (A)

Providence ALS Center, Portland, OR, USA.

Eli K Edwards (EK)

Providence ALS Center, Portland, OR, USA.

Michael Rivner (M)

Department of Neurology, Augusta University, Augusta, GA, USA.

Kristy Bouchard (K)

Department of Neurology, Augusta University, Augusta, GA, USA.

Brandy Quarles (B)

Department of Neurology, Augusta University, Augusta, GA, USA.

Justin Kwan (J)

University of Maryland Medical Center, College Park, MD, USA.

Matthew Jaffa (M)

University of Maryland Medical Center, College Park, MD, USA.

Robert Baloh (R)

Cedars-Sinai Medical Center, Los Angeles, CA, USA.

Peggy Allred (P)

Cedars-Sinai Medical Center, Los Angeles, CA, USA.

David Walk (D)

Department of Neurology, University of Minnesota Medical Center, Minneapolis, MN, USA.

Samuel Maiser (S)

Department of Neurology, University of Minnesota Medical Center, Minneapolis, MN, USA.

Georgios Manousakis (G)

Department of Neurology, University of Minnesota Medical Center, Minneapolis, MN, USA.

Valerie Ferment (V)

Department of Neurology, University of Minnesota Medical Center, Minneapolis, MN, USA.

J Americo M Fernandes (JAM)

Department of Neurological Sciences, University of Nebraska Medical Center, Omaha, NE, USA.

Pariwat Thaisetthawatkul (P)

Department of Neurological Sciences, University of Nebraska Medical Center, Omaha, NE, USA.

Deborah Heimes (D)

Department of Neurological Sciences, University of Nebraska Medical Center, Omaha, NE, USA.

Melissa Phillips (M)

Vidant Medical Center, Greenville, NC, USA.

Laura Sams (L)

Department of Neuroscience, University of Cincinnati Medical Center, Cincinnati, OH, USA.

Melissa Kahler (M)

Department of Neuroscience, University of Cincinnati Medical Center, Cincinnati, OH, USA.

Alecia Corcoran (A)

Department of Neuroscience, University of Cincinnati Medical Center, Cincinnati, OH, USA.

Daniel G Larriviere (DG)

Ochsner Health System, New Orleans, LA, USA.

Sadie Chotto (S)

Ochsner Health System, New Orleans, LA, USA.

Gracy Juba (G)

Ochsner Health System, New Orleans, LA, USA.

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Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Maladies métaboliques et nutritionnelles › Maladies métaboliques › Troubles de l'homéostasie des protéines › Protéinopathies TDP-43 › Sclérose latérale amyotrophique › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Maladies du système nerveux › Maladies neuromusculaires › Maladies du motoneurone › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Maladies du système nerveux › Maladies neurodégénératives › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enregistrements › The NEALS primary lateral sclerosis registry.
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études épidémiologiques › Études de cohortes › Études rétrospectives › The NEALS primary lateral sclerosis registry.