Advanced search
Publication Cover
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 19, 2018 - Issue 7-8
Submit an article Journal homepage
938
Views
51
CrossRef citations to date
0
Altmetric
Research Article

The Swedish motor neuron disease quality registry

Elisa LonginettiDepartment of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden, ORCID Iconhttp://orcid.org/0000-0002-4789-7172View further author information
ORCID Icon,
Amanda Regodón WallinDepartment of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden, View further author information
,
Kristin SamuelssonDepartment of Neurology, Karolinska University Hospital, Stockholm, Sweden, ;Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden, View further author information
,
Rayomand PressDepartment of Neurology, Karolinska University Hospital, Stockholm, Sweden, ;Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden, View further author information
,
Anne ZachauDepartment of Neurology, Karolinska University Hospital, Stockholm, Sweden, View further author information
,
Lars-Olof RonneviDepartment of Neurology, Karolinska University Hospital, Stockholm, Sweden, ;Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden, View further author information
,
Marie KierkegaardFunction Area Occupational therapy and Physiotherapy, Karolinska University Hospital, Stockholm, Sweden, ;Department of Neurobiology Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden, and View further author information
,
Peter M AndersenDepartment of Clinical Neurosciences, Umeå University, Stockholm, SwedenView further author information
,
Jan HillertDepartment of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden, View further author information
,
Fang FangDepartment of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden, View further author information
&
Caroline IngreDepartment of Neurology, Karolinska University Hospital, Stockholm, Sweden, ;Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden, Correspondence[email protected]
View further author information
 show all
Pages 528-537 | Received 22 Mar 2018, Accepted 28 Jun 2018, Published online: 09 Oct 2018

Citations (51)

Keep up to date with the latest research on this topic with citation updates for this article.

Subscribe to citation updates

Read on this site (16)

Juliette Foucher, Ivar Winroth, Anikó Lovik, Stefan Sennfält, Joana B. Pereira, Fang Fang, Dorothee Lule, Peter M. Andersen & Caroline Ingre. (2023) Validity and reliability measures of the Swedish Karolinska version of the Edinburgh Cognitive and Behavioral ALS Screen (SK-ECAS). Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:7-8, pages 713-718.
Read now
Stefan Sennfält, Marco Pagani, Fang Fang, Irina Savitcheva, Ulrika Estenberg & Caroline Ingre. (2023) FDG-PET shows weak correlation between focal motor weakness and brain metabolic alterations in ALS. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:5-6, pages 485-494.
Read now
Stefan Sennfält, Ulf Kläppe, Sebastian Thams, Kristin Samuelsson, Rayomand Press, Fang Fang & Caroline Ingre. (2023) Dying from ALS in Sweden: clinical status, setting, and symptoms. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:3-4, pages 237-245.
Read now
Roberto Teodoro Gurgel De Oliveira, Glauciane Costa Santana, Maria De Jesus Gonçalves, Guilherme Augusto De Freitas Fregonezi, Sancha Helena De Lima Vale, Lucia Leite-Lais & Mário Emílio Teixeira Dourado$suffix/text()$suffix/text(). (2023) A geographical study on amyotrophic lateral sclerosis in Rio Grande Do Norte, Brazil, from 2005 to 2018. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:1-2, pages 117-124.
Read now
Stefan Sennfält, Ulf Kläppe, Sebastian Thams, Kristin Samuelsson, Rayomand Press, Fang Fang & Caroline Ingre. (2023) The path to diagnosis in ALS: delay, referrals, alternate diagnoses, and clinical progression. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:1-2, pages 45-53.
Read now
Elisa Longinetti, Olafur Sveinsson, Rayomand Press, Weimin Ye, Caroline Ingre, Fredrik Piehl & Fang Fang. (2022) ALS patients with concurrent neuroinflammatory disorders; a nationwide clinical records study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:3-4, pages 209-219.
Read now
. (2021) Theme 09 - CLINICAL TRIALS AND TRIAL DESIGN. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:sup2, pages 150-173.
Read now
Kristina Gottberg, Charlotte Ytterberg, Petter Sandstedt, Sverker Johansson & Marie Kierkegaard. (2021) Experiences of next of kin to patients with amyotrophic lateral sclerosis using invasive ventilation via tracheostomy. Disability and Rehabilitation 43:17, pages 2403-2410.
Read now
Jiangwei Sun, Jonas F. Ludvigsson, Bjorn Roelstraete, Yudi Pawitan & Fang Fang. (2021) Gastrointestinal biopsies and amyotrophic lateral sclerosis – results from a cohort study of 1.1 million individuals. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:5-6, pages 410-418.
Read now
Dongqing Gu, Shan Ou, Mingshuang Tang, Zhiyong Yin, Zhengguo Wang & Guodong Liu. (2021) Trauma and amyotrophic lateral sclerosis: a systematic review and meta-analysis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:3-4, pages 170-185.
Read now
Can Cui, Elisa Longinetti, Henrik Larsson, John Andersson, Yudi Pawitan, Fredrik Piehl & Fang Fang. (2021) Associations between autoimmune diseases and amyotrophic lateral sclerosis: a register-based study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:3-4, pages 211-219.
Read now
Hilmi Uysal, Parvin Taghiyeva, Mehtap Türkay, Fırat Köse & Mehmet Aktekin. (2021) Amyotrophic lateral sclerosis in Antalya, Turkey. A prospective study, 2016–2018. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:1-2, pages 101-107.
Read now
HIlmi Uysal, Uğur Bilge, Nevruz İlhanli, Marta Gromicho, Julian Grosskreutz, Magdalena Kuzma-Kozakiewicz, Susana Pinto, Susanne Petri, Katarzyna Szacka, Krzysztof Nieporecki & Mamede De Carvalho. (2021) ALS and fertility: does ALS affect number of children patients have?. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 22:1-2, pages 94-100.
Read now
Caterina Bendotti, Valentina Bonetto, Elisabetta Pupillo, Giancarlo Logroscino, Ammar Al-Chalabi, Christian Lunetta, Nilo Riva, Gabriela Mora, Giuseppe Lauria, Jochen H. Weishaupt, Federica Agosta, Andrea Malaspina, Manuela Basso, Linda Greensmith, Ludo Van Den Bosch, Antonia Ratti, Massimo Corbo, Orla Hardiman, Adriano Chiò, Vincenzo Silani & Ettore Beghi. (2020) Focus on the heterogeneity of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:7-8, pages 485-495.
Read now
Hebatallah R. Rashed & Mohamed A. Tork. (2020) Diagnostic delay among ALS patients: Egyptian study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 21:5-6, pages 416-419.
Read now
Danielle Leighton, Judith Newton, Shuna Colville, Andrew Bethell, Gillian Craig, Laura Cunningham, Moira Flett, Dianne Fraser, Janice Hatrick, Helen Lennox, Laura Marshall, Dympna McAleer, Alison McEleney, Kitty Millar, Ann Silver, Laura Stephenson, Susan Stewart, Dorothy Storey, Gill Stott, Carol Thornton, Carolyn Webber, Harry Gordon, Giulia Melchiorre, Laura Sherlock, Emily Beswick, David Buchanan, Sharon Abrahams, Anthony Bateman, Jenny Preston, Callum Duncan, Richard Davenport, George Gorrie, Ian Morrison, Robert Swingler, Siddharthan Chandran & Suvankar Pal. (2019) Clinical audit research and evaluation of motor neuron disease (CARE-MND): a national electronic platform for prospective, longitudinal monitoring of MND in Scotland. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 20:3-4, pages 242-250.
Read now

Articles from other publishers (35)

Ingridy M. P. Barbalho, Aleika L. A. Fonseca, Felipe Fernandes, Jorge Henriques, Paulo Gil, Danilo Nagem, Raquel Lindquist, Thaisa Lima, João Paulo Queiroz dos Santos, Jailton Paiva, Antonio H. F. Morais, Mário E. T. Dourado Júnior & Ricardo A. M. Valentim. (2023) Digital health solution for monitoring and surveillance of Amyotrophic Lateral Sclerosis in Brazil. Frontiers in Public Health 11.
Crossref
Adrienne Sulistyo, Agessandro Abrahao, Maria Eliza Freitas, Benjamin Ritsma & Lorne Zinman. (2023) Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews 2023:8.
Crossref
Radwa Soliman, Hebatallah R. Rashed, Ramez R. Moustafa, Nabila Hamdi, Mahmoud S. Swelam, Ahmad Osman & Nagia Fahmy. (2023) Egyptian adaptation and validation of the Edinburgh Cognitive and Behavioral Amyotrophic Lateral Sclerosis Screen (ECAS-EG). Neurological Sciences 44:6, pages 1871-1880.
Crossref
Zeynep YILDIRIM, Dicle Naz TOKTAŞ, Öznur DEMİR, Zülfiye GÜL & Burcu ŞEN UTSUKARÇİ. (2023) Amyotrofik Lateral Skleroz Patofizyolojisi ve Tedavi YaklaşımlarıAn Evaluation of Amyotrophic Lateral Sclerosis and Current Situation in Its Treatment. Hacettepe University Journal of the Faculty of Pharmacy.
Crossref
Tomás Segura, Ignacio H. Medrano, Sergio Collazo, Claudia Maté, Carlo Sguera, Carlos Del Rio-Bermudez, Hugo Casero, Ignacio Salcedo, Jorge García-García, Cristian Alcahut-Rodríguez, José Aquino, David Casadevall, David Donaire, Judith Marin-Corral, Sebastian Menke, Natalia Polo & Miren Taberna. (2023) Symptoms timeline and outcomes in amyotrophic lateral sclerosis using artificial intelligence. Scientific Reports 13:1.
Crossref
Xu Chen, Lu Zhou, Can Cui & Jiangwei Sun. 2023. 225 246 .
Baptiste Couvy-Duchesne, Simona Bottani, Etienne Camenen, Fang Fang, Mulusew Fikere, Juliana Gonzalez-Astudillo, Joshua Harvey, Ravi Hassanaly, Irfahan Kassam, Penelope A. Lind, Qianwei Liu, Yi Lu, Marta Nabais, Thibault Rolland, Julia Sidorenko, Lachlan Strike & Margie Wright. 2023. Machine Learning for Brain Disorders. Machine Learning for Brain Disorders 753 804 .
Solmaz Yazdani, Christina Seitz, Can Cui, Anikó Lovik, Lu Pan, Fredrik Piehl, Yudi Pawitan, Ulf Kläppe, Rayomand Press, Kristin Samuelsson, Li Yin, Trung Nghia Vu, Anne-Laure Joly, Lisa S. Westerberg, Björn Evertsson, Caroline Ingre, John Andersson & Fang Fang. (2022) T cell responses at diagnosis of amyotrophic lateral sclerosis predict disease progression. Nature Communications 13:1.
Crossref
Obaid Afzal, Mahmood Hassan Dalhat, Abdulmalik S. A. Altamimi, Rabia Rasool, Sami I. Alzarea, Waleed Hassan Almalki, Bibi Nazia Murtaza, Saima Iftikhar, Shamaila Nadeem, Muhammad Shahid Nadeem & Imran Kazmi. (2022) Green Tea Catechins Attenuate Neurodegenerative Diseases and Cognitive Deficits. Molecules 27:21, pages 7604.
Crossref
Jiangwei Sun, Jonas F. Ludvigsson, Caroline Ingre, Fredrik Piehl, Karin Wirdefeldt, Ulrika Zagai, Weimin Ye & Fang Fang. (2022) Hospital-treated infections in early- and mid-life and risk of Alzheimer’s disease, Parkinson’s disease, and amyotrophic lateral sclerosis: A nationwide nested case-control study in Sweden. PLOS Medicine 19:9, pages e1004092.
Crossref
Per Wändell, Sten Fredrikson, Axel C. Carlsson, Xinjun Li, Jan Sundquist & Kristina Sundquist. (2021) Amyotrophic lateral sclerosis (ALS) among immigrant groups and Swedish-born individuals: a cohort study of all adults 18 years of age and older in Sweden. Journal of Neurology 269:4, pages 1989-1995.
Crossref
Can Cui, Caroline Ingre, Li Yin, Xia Li, John Andersson, Christina Seitz, Nicolas Ruffin, Yudi Pawitan, Fredrik Piehl & Fang Fang. (2022) Correlation between leukocyte phenotypes and prognosis of amyotrophic lateral sclerosis. eLife 11.
Crossref
Gavin McCluskey, William Duddy, Stephen Haffey, Karen Morrison, Colette Donaghy & Stephanie Duguez. (2021) Epidemiology and survival trends of motor neurone disease in Northern Ireland from 2015 to 2019. European Journal of Neurology 29:3, pages 707-714.
Crossref
Malan Johansen, Kirsten Svenstrup, Poul Joensen, Bjarni á Steig, Guðrið Andorsdóttir, Torben Hansen & Maria Skaalum Petersen. (2022) High incidence of amyotrophic lateral sclerosis in the Faroe Islands 2010–2020. Annals of Clinical and Translational Neurology 9:2, pages 227-231.
Crossref
Alexander G Thompson, Kevin Talbot & Martin R Turner. (2022) Higher blood high density lipoprotein and apolipoprotein A1 levels are associated with reduced risk of developing amyotrophic lateral sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 93:1, pages 75-81.
Crossref
Nitesh Sanghai & Geoffrey K. Tranmer. (2021) Hydrogen Peroxide and Amyotrophic Lateral Sclerosis: From Biochemistry to Pathophysiology. Antioxidants 11:1, pages 52.
Crossref
Salvatore D’Antona, Martina Caramenti, Danilo Porro, Isabella Castiglioni & Claudia Cava. (2021) Amyotrophic Lateral Sclerosis: A Diet Review. Foods 10:12, pages 3128.
Crossref
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.
Crossref
Recep YEVGİ & Nuray BİLGE. (2021) Clinical and epidemiological features of amyotrophic lateral sclerosis in eastern Turkey. Journal of Health Sciences and Medicine 4:5, pages 576-581.
Crossref
Radwa Soliman, Nahla O. Mousa, Hebatallah R. Rashed, Ramez R. Moustafa, Nabila Hamdi, Ahmad Osman & Nagia Fahmy. (2021) Assessment of diagnostic potential of some circulating microRNAs in Amyotrophic Lateral Sclerosis Patients, an Egyptian study. Clinical Neurology and Neurosurgery 208, pages 106883.
Crossref
Valentina Novak, Boris Rogelj & Vera Župunski. (2021) Therapeutic Potential of Polyphenols in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Antioxidants 10:8, pages 1328.
Crossref
Salvatore D’Antona, Gloria Bertoli, Isabella Castiglioni & Claudia Cava. (2021) Minor Allele Frequencies and Molecular Pathways Differences for SNPs Associated with Amyotrophic Lateral Sclerosis in Subjects Participating in the UKBB and 1000 Genomes Project. Journal of Clinical Medicine 10:15, pages 3394.
Crossref
Anna Månberg, Nathan Skene, Folkert Sanders, Marta Trusohamn, Julia Remnestål, Anna Szczepińska, Inci Sevval Aksoylu, Peter Lönnerberg, Lwaki Ebarasi, Stefan Wouters, Manuela Lehmann, Jennie Olofsson, Inti von Gohren Antequera, Aylin Domaniku, Maxim De Schaepdryver, Joke De Vocht, Koen Poesen, Mathias Uhlén, Jasper Anink, Caroline Mijnsbergen, Hermieneke Vergunst-Bosch, Annemarie Hübers, Ulf Kläppe, Elena Rodriguez-Vieitez, Jonathan D. Gilthorpe, Eva Hedlund, Robert A. Harris, Eleonora Aronica, Philip Van Damme, Albert Ludolph, Jan Veldink, Caroline Ingre, Peter Nilsson & Sebastian A. Lewandowski. (2021) Altered perivascular fibroblast activity precedes ALS disease onset. Nature Medicine 27:4, pages 640-646.
Crossref
Adriaan D. de JonghRuben P.A. van Eijk, Susan M. PetersMichael A. van EsAnja M.C. HoremansAnneke J. van der KooiNicol C. VoermansRoel C.H. VermeulenJan H. Veldink & Leonard H. van den Berg. (2021) Incidence, Prevalence, and Geographical Clustering of Motor Neuron Disease in the Netherlands. Neurology 96:8.
Crossref
F. Henning, J. M. Heckmann, K. Naidu, L. Vlok, H. M. Cross & B. Marin. (2020) Incidence of motor neuron disease/amyotrophic lateral sclerosis in South Africa: a 4‐year prospective study. European Journal of Neurology 28:1, pages 81-89.
Crossref
Hebatallah R. Rashed & Mohamed A. Tork. (2020) Diagnostic dilemma of amyotrophic lateral sclerosis (ALS): insights from the first ALS specialized clinic in Egypt. The Egyptian Journal of Neurology, Psychiatry and Neurosurgery 56:1.
Crossref
Dilcan Kotan, Zeynep Özözen Ayas, Ceren Tunca, Belma Dogan Gungen, Fulya Akçimen & A. Nazlı Başak. (2020) Phenotypic and genotypic features of patients diagnosed with ALS in the city of Sakarya, Turkey. Acta Neurologica Belgica 120:6, pages 1411-1418.
Crossref
Hakan Cetin, Jiangwei Sun, Catarina Almqvist, Berthold Reichardt, Matthias Tomschik, Fritz Zimprich, Fang Fang & Caroline Ingre. (2020) No association between proton pump inhibitor use and ALS risk: a nationwide nested case–control study. Scientific Reports 10:1.
Crossref
Can Cui, Jiangwei Sun, Yudi Pawitan, Fredrik Piehl, Honglei Chen, Caroline Ingre, Karin Wirdefeldt, Marie Evans, John Andersson, Juan-Jesus Carrero & Fang Fang. (2020) Creatinine and C-reactive protein in amyotrophic lateral sclerosis, multiple sclerosis and Parkinson’s disease. Brain Communications 2:2.
Crossref
Anna Caroline Braga, Marta Gromicho, Susana Pinto, Mamede de Carvalho & Franclo Henning. (2020) A comparative study of South African and Portuguese amyotrophic lateral sclerosis cohorts. Journal of the Neurological Sciences 414, pages 116857.
Crossref
D. Mariosa, F. Kamel, R. Bellocco, L.‐O. Ronnevi, C. Almqvist, H. Larsson, W. Ye & F. Fang. (2020) Antidiabetics, statins and the risk of amyotrophic lateral sclerosis. European Journal of Neurology 27:6, pages 1010-1016.
Crossref
Caroline IngreLin ChenYiqiang ZhanJet TermorshuizenLi YinFang Fang. (2020) Lipids, apolipoproteins, and prognosis of amyotrophic lateral sclerosis. Neurology 94:17.
Crossref
Solmaz Yazdani, Daniela Mariosa, Niklas Hammar, John Andersson, Caroline Ingre, Göran Walldius & Fang Fang. (2019) Peripheral immune biomarkers and neurodegenerative diseases: A prospective cohort study with 20 years of follow‐up. Annals of Neurology 86:6, pages 913-926.
Crossref
J. Sun, Y. Zhan, D. Mariosa, H. Larsson, C. Almqvist, C. Ingre, U. Zagai, Y. Pawitan & F. Fang. (2019) Antibiotics use and risk of amyotrophic lateral sclerosis in Sweden. European Journal of Neurology 26:11, pages 1355-1361.
Crossref
Elisa Longinetti & Fang Fang. (2019) Epidemiology of amyotrophic lateral sclerosis: an update of recent literature. Current Opinion in Neurology 32:5, pages 771-776.
Crossref

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Order Reprints Request Corporate Permissions

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

Request Academic Permissions

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.