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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 20, 2019 - Issue 3-4
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Original Articles

Lack of consensus in ALS genetic testing practices and divergent views between ALS clinicians and patients

Holly KlepekDivision of Human Genetics, The Ohio State University Medical Center, Columbus, OH, USA;
,
Haikady NagarajaDivision of Biostatistics, The Ohio State University, Columbus, OH, USA;
,
Stephen A. GoutmanDepartment of Neurology, University of Michigan, Ann Arbor, MI, USA;
,
Adam QuickDepartment of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA;
,
Stephen J. KolbDepartment of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA; ;Department of Biological Chemistry & Pharmacy, The Ohio State University Wexner Medical Center, Columbus, OH, USA;
&
Jennifer RoggenbuckDivision of Human Genetics, The Ohio State University Medical Center, Columbus, OH, USA; ;Department of Neurology, The Ohio State University Wexner Medical Center, Columbus, OH, USA; ;Department of Neurology, The Ohio State University Medical Center, Columbus, OH, USACorrespondence[email protected]
Pages 216-221 | Received 02 Nov 2018, Accepted 03 Feb 2019, Published online: 01 Apr 2019

Citations (18)

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Hugo M. De Oliveira, Arunachalam Soma, Mark R. Baker, Martin R. Turner, Kevin Talbot & Timothy L. Williams. (2023) A survey of current practice in genetic testing in amyotrophic lateral sclerosis in the UK and Republic of Ireland: implications for future planning. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:5-6, pages 405-413.
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Ashley Crook, Chris Jacobs, Toby Newton-John & Alison McEwen. (2022) Toward genetic counseling practice standards for diagnostic testing in amyotrophic lateral sclerosis and frontotemporal dementia. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:7-8, pages 562-574.
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Kristiana Salmon, Nancy Anoja, Ari Breiner, Marvin Chum, Annie Dionne, Nicolas Dupré, Amanda Fiander, Daniel Fok, Amer Ghavanini, Sylvie Gosselin, Aaron Izenberg, Wendy Johnston, Sanjay Kalra, Geneviève Matte, Michel Melanson, Colleen O’Connell, Benjamin Ritsma, Kerri Schellenberg, Christen Shoesmith, Sandra Tremblay, Heather Williams & Angela Genge. (2022) Genetic testing for amyotrophic lateral sclerosis in Canada – an assessment of current practices. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 23:3-4, pages 305-312.
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Articles from other publishers (15)

Nan Hu, Lei Zhang, Dongchao Shen, Xunzhe Yang, Mingsheng Liu & Liying Cui. (2023) Incidence of amyotrophic lateral sclerosis-associated genetic variants: a clinic-based study. Neurological Sciences.
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Jennifer Roggenbuck, Breda H. F. Eubank, Joshua Wright, Matthew B. Harms & Stephen J. Kolb. (2023) Evidence‐based consensus guidelines for ALS genetic testing and counseling . Annals of Clinical and Translational Neurology 10:11, pages 2074-2091.
Crossref
Chelsea Chambers, Lauren Lichten, Ashley Crook, Wendy R. Uhlmann & Laynie Dratch. (2023) Incorporating Genetic Testing Into the Care of Patients With Amyotrophic Lateral Sclerosis/Frontotemporal Degeneration Spectrum Disorders. Neurology Clinical Practice 13:5.
Crossref
Ashley Crook, Chris Jacobs, Toby Newton‐John & Alison McEwen. (2022) Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences. Journal of Genetic Counseling 31:5, pages 1206-1218.
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Kristiana Salmon, Matthew C. Kiernan, Seung H. Kim, Peter M. Andersen, Adriano Chio, Leonard H. van den Berg, Philip Van Damme, Ammar Al-Chalabi, Patricia Lillo, Jinsy A. Andrews & Angela Genge. (2022) The importance of offering early genetic testing in everyone with amyotrophic lateral sclerosis. Brain 145:4, pages 1207-1210.
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Thanuja Dharmadasa, Jakub Scaber, Evan Edmond, Rachael Marsden, Alexander Thompson, Kevin Talbot & Martin R Turner. (2022) Genetic testing in motor neurone disease. Practical Neurology 22:2, pages 107-116.
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Stephanie White, Jane Phillips, Erin Turbitt & Chris Jacobs. (2021) Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study. Supportive Care in Cancer 30:2, pages 1615-1624.
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Ashley Crook, Chris Jacobs, Toby Newton-John, Rosie O’Shea & Alison McEwen. (2021) Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review. Journal of Neurology 269:2, pages 676-692.
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Maysen Mesaros, Steven Lenz, Woobeen Lim, Jordan Brown, Luke Drury & Jennifer Roggenbuck. (2021) Investigating the Genetic Profile of the Amyotrophic Lateral Sclerosis/Frontotemporal Dementia (ALS-FTD) Continuum in Patients of Diverse Race, Ethnicity and Ancestry. Genes 13:1, pages 76.
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Jennifer Roggenbuck, Kelly A. RichLeah ViciniMarilly PalettasJoceyln SchroederChristina ZaleskiTara LincolnLuke DruryJonathan D. Glass. (2021) Amyotrophic Lateral Sclerosis Genetic Access Program. Neurology Genetics 7:5.
Crossref
Ashley Crook, Chris Jacobs, Toby Newton-John, Ebony Richardson & Alison McEwen. (2021) Patient and Relative Experiences and Decision-making About Genetic Testing and Counseling for Familial ALS and FTD. Alzheimer Disease & Associated Disorders 35:4, pages 374-385.
Crossref
Jennifer Roggenbuck. (2021) C9orf72 and the Care of the Patient With ALS or FTD . Neurology Genetics 7:1.
Crossref
Benjamin Rix Brooks & Jerome E. Kurent. 2021. Public Policy in ALS/MND Care. Public Policy in ALS/MND Care 301 326 .
Jennifer Roggenbuck & Jamie C. Fong. (2020) Genetic Testing for Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Clinics in Laboratory Medicine 40:3, pages 271-287.
Crossref
Jennifer Roggenbuck, Marilly PalettasLeah ViciniRadha PatelAdam QuickStephen J. Kolb. (2020) Incidence of pathogenic, likely pathogenic, and uncertain ALS variants in a clinic cohort. Neurology Genetics 6:1.
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