Vores publikationer

I nedenstående oversigt kan du finde videnskabelige artikler, som RehabiliteringsCenter for Muskelsvind har publiceret eller bidraget til i nationale eller internationale tidsskrifter.

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Projekt HAP-PEE – at kunne tisse når man skal

Charlotte Handberg, Bente Kristensen, Bente Thoft Jensen, Sarah Glerup, Antoniet Pharao, Jeanette Strøm, Ulla Werlauff

25/08 2025
Living and coping with adult-onset myotonic dystrophy type 1 from the perspectives of caregivers

Kristin Allergodt, Ulla Werlauff, Pia Dreyer, Kristin Ørstavik, Charlotte Handberg

21/08 2025
“This Disease Is a Verdict You Must Live With for the Rest of Your Life”: Experiences and Perspectives From People Living With Adult-Onset Myotonic Dystrophy Type 1

Kristin Allergodt, Bente Kristensen, Ulla Werlauff, Pia Dreyer , Marit Kirkevold, Charlotte Handberg

10/07 2025
Prevalence and predictors of prolonged grief disorder, anxiety and depression in bereaved ALS family caregivers: a national survey of distress and support needs after bereavement

Lone F. Knudsen & Sabina Nikolajevic-Pujic

30/06 2025
Challenges and rehabilitation needs among adults with myasthenia gravis – a Danish crosssectional questionnaire study

Lene Klem Olesen, Charlotte Handberg, Malene Missel, Liselotte Schierakow, Ulla Werlauff

23/05 2025
Factors of Importance for Continuing Education After PrimarySchool in Young People With Neuromuscular Diseases—Patient-Reported Outcomes From a National Survey

Charlotte Handberg, Kristin Allergodt, Annette Mahoney, Ann-Lisbeth Højberg

14/05 2025
“It doesn’t get more normal than that!” – challenges with sexuality experienced by people with neuromuscular diseases and their needs for rehabilitation knowledge and guidance on sexual life

Joan Pathenia Kajhøj Møller, Karina Winther Hansen, Charlotte Handberg

18/12 2024
Medical treatment of children with spinal muscular atrophy – An investigation of parents’ experiences of hopes, worries and need for rehabilitation for their child (poster)

Charlotte Handberg Ulla Werlauff, Pia Zinck Drivsholm, Sanne Okkels Birk Lorenzen,
Annette Mahoney

10/10 2024
Evaluation of physical function before and after medical treatment in non-ambulant patients with spinal muscular atrophy aged 11-25 (poster)

Ulla Werlauff, Annette Mahoney, Lene Klem Olsen, Pia Zinck Drivsholm, Runa Iversen, Lene Busk, Helle Laustsen, Birgitte Heiden, Charlotte Handberg

10/10 2024
Utilization and costs of healthcare services and labour market affiliation of persons with adult-onset myotonic dystrophy type 1 (DM1) – a Danish register-based study (Study II) (poster)

Charlotte Handberg, Jan Håkon Rudolfsen, Henning Andersen, John Vissing, Charlotte Dahl Rossau, Pia Dreyer, Jens Olsen, Simone D Bengtsson, Heidi Aagaard, Ulla Werlauff

09/10 2024
Comorbidities and mortality of persons with adult-onset myotonic dystrophy (DM1) – a Danish register-based study (Study I) (poster)

Ulla Werlauff, Jan Håkon Rudolfsen, Henning Andersen, John Vissing, Charlotte Dahl Rossau, Pia Dreyer, Jens Olsen, Simone D Bengtsson, Heidi Aagaard, Charlotte Handberg

09/10 2024
Living with adult-onset myotonic dystrophy type 1: a scoping review

Kristin Allergodt, Pia Dreyer, Ulla Werlauff, Charlotte Handberg

30/08 2024
Scand J Caring Sci . 2024 Aug 27. doi: 10.1111/scs.13295. Online ahead of print. School absence legislation governing in Norway, Sweden and Denmark for children with chronic illness in compulsory education-A comparative study

Sofie Skoubo , Charlotte Handberg, Mette Weibel, Hanne Bækgaard Larsen

27/08 2024
HAP-PEE: A Danish National Study of Challenges Related to Urinating When Away from Home in Women with Neuromuscular Diseases, Impact on Activity and Participation and Prevalence of Lower Urinary Tract Symptoms

Ulla Werlauff, Charlotte Handberg, Bente Kristensen, Sarah Glerup, Antoniett Vebel Pharao, Jeanette Strøm, Bente Thoft Jensen

02/07 2024
Perspectives of Young People with Neuromuscular Diseases Regarding Their Choice of Educational Programs and Possibilities to Complete Program Requirements

Charlotte Handberg, Helle Munkholm, Ann-Lisbeth Højberg

01/07 2024
Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home

Charlotte Handberg , Bente Kristensen, Bente Thoft, Jensen, Sarah Glerup, Antoniett Vebel Pharao, Jeanette Strøm, og Ulla Werlauff

25/06 2024
Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury

Karoline Yde Andersen, Sophie Lykkegaard Ravn, Marlene Krogh & Charlotte Handberg

11/06 2024
Sitting clinic for children with neuromuscular diseases (poster)

Lone Bech Christensen, Runa Iversen

03/06 2024
Experiences of an Online Palliative Rehabilitation Programme for Spousal Caregivers of People With Amyotrophic Lateral Sclerosis and Cognitive and/or Behavioural Impairments: A Qualitative Interpretive Study

Olesen LK, la Cour K, Nimmon L, With H, Handberg C

09/02 2024
Burden of Disease of Duchenne Muscular Dystrophy in Denmark – A National Register-Based Study of Individuals with Duchenne Muscular Dystrophy and their Closest Relatives

Rudolfsen JH, Vissing J, Werlauff U, Olesen C, Illum N, Olsen J, Poulsen PB, Strand M, Born AP

09/01 2024
People with neuromuscular diseases and their relatives’ perspectives on challenges in everyday life and healthcare

Handberg C, Werlauff U

11/12 2023
Perceived benefits from peer-support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning program. (Poster)

Lene Klem Olesen, Karen la Cour, Sally Thorne, Heidi With, Charlotte Handberg

01/12 2023
Reflections of family caregivers and health professionals on the everyday challenges of caring for people with ALS and cognitive impairments: a qualitative study. (Poster)

Lene Klem Olesen; Karen la Cour; Heidi With; Charlotte Handberg

01/12 2023
HAP-PEE study 1 – Challenges faced by women with neuromuscular diseases when having to urinate away from home (poster)

02/10 2023
HAP-PEE study II – Going when you have to” – problems in urinating when away from home as a woman with NMD (poster)

02/10 2023
Development of an International SMA Bulbar Assessment for Inter-professional Administration

Dunaway Young S, McGrattan K, Johnson E, van der Heul M, Duong T, Bakke M, Werlauff U, Pasternak A, Cattaneo C, Hoffman K, Fanelli L, Breaks A, Allison K, Baranello G, Finkel R, Coratti G, Lofra RM

01/10 2023
Telepresence robots to reduce school absenteeism among children with cancer, neuromuscular diseases, or anxiety—the expectations of children and teachers: A qualitative study in Denmark

Mette Wibel, Sofie Skoubo, Charlotte Handberg, Lykke Brogaard Bertel, Nonni Camilla Steinrud, Kjeld Schmiegelow, Inger Kristensson Hallström, Hanne Bækgaard Larsen

31/03 2023
Cross-sectoral collaboration among hospital professionals on rehabilitation for patients with neuromuscular diseases

Charlotte Handberg, Ulla Werlauff

30/03 2023
Perceived benefits from peer‐support among family caregivers of people with amyotrophic lateral sclerosis and cognitive impairments in a palliative rehabilitation blended online learning programme

Lene Klem Olesen, Karen la Cour, Sally Thorne, Heidi With, Charlotte Handberg

11/01 2023
Development and evaluation of a palliative rehabilitation blended learning program to support family caregivers of people with ALS and cognitive and/or behavioral impairments – a complex intervention study focusing on acceptance and perspectives (PhD dissertation)

Lene Klem Olesen

11/01 2023
Mental health reported in adult invasive home mechanical ventilation through a tracheostomy: A scoping review

Martin Locht Pedersen, Charlotte Handberg, Pia Dreyer

01/12 2022
National tværsnitsundersøgelse af patienter med ALS i invasiv respiratorbehandling 2020-2022 (Poster)

Sine Versterre

01/12 2022
‘It Becomes the New Everyday Life’ – Experiences of Chronic Pain in Everyday Life of People with Limb-Girdle Muscular Dystrophy (Poster)

01/12 2022
‘It becomes the new everyday life’ – experiences of chronic pain in everyday life of people with limbgirdle muscular dystrophy (Article)

Louise T. H. Vrist, Lone F. Knudsen & Charlotte Handberg

07/11 2022
New medicine for neuromuscular diseases: An evolving paradox for patient and family hopes and expectations

Annette Mahoney, Charlotte Handberg

19/09 2022
Cross-sectorial collaboration on policy-driven rehabilitation care models for persons with neuromuscular diseases: refections and behavior of community-based health professionals

Charlotte Handberg, Ulla Werlauff

17/09 2022
Reflections on the Complexity of Normalcy in Nursing and Health Care

Charlotte Handberg, Lene Seibæk, Sally Thorne, Kirsten Beedholm

18/08 2022
Maintaining good wheelchair posture throughout life (Poster)

Helle Munkholm

Lone Bech Christensen

01/06 2022
A life-long perspective on sitting – from child to adult with a neuromuscular disease (Poster)

Helle Munkholm

01/06 2022
The RCFM rehabilitation model

Ann-Lisbeth Højberg

Lone Bech Christensen

01/06 2022
A cross‑sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments

Lene Klem Olesen, Karen la Cour, Heidi With, Annette Faber Mahoney, Charlotte Handberg

25/05 2022
A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000–2019

Kristin Allergodt, Charlotte Handberg, Asger Frost, Ulla Werlauff

22/05 2022
Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids

Charlotte Handberg, Ulla Werlauff, Ann-Lisbeth Højberg

27/04 2022
Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study

Lene Klem Olesen, Karen la Cour, Heidi With, Charlotte Handberg

15/02 2022
Prevalence of chronic pain in a national cohort of patients with limb-girdle muscular dystrophy: a cross-sectional study

Rikke Nicoline Stokholm, Charlotte Handberg & Lone F. Knudsen

15/11 2021
Natural History of a Steriod Naive Duchenne Muscular Dystrophy Cohort

Birgit F. Steffensen, Jørgen Jeppesen, Ulla Werlauff, Jes Rahbek

Poster

01/10 2021
Investigating job satisfaction in palliative rehabilitation: Reflections and perspectives of health professionals working with amyotrophic lateral sclerosis

Tine Gamskjaer, Ulla Werlauff, Charlotte Handberg

J Eval Clin Pract. 2021 Jul 16. doi: 10.1111/jep.13599. Epub ahead of print. PMID: 34269500.

16/07 2021
Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)-Patient reported outcomes from a national survey

Handberg C, Werlauff U, Højberg AL, Knudsen LF.

PLoS One. 2021 Jun 30;16(6):e0253715. doi: 10.1371/journal.pone.0253715. PMID: 34191825; PMCID: PMC8244874.

30/06 2021
Ageing with neuromuscular disease: getting lost in transitions

Møller LA, Martinsen B, Werlauff U, Dreyer P

Disabil Rehabil. 2021 Mar 24:1-8.

24/03 2021
Progression or Not – A Small Natural History Study of Genetical Confirmed Congenital Myopathies

Werlauff U, Hansen PD, Witting N, Vissing J

J Neuromuscul Dis. 2021 Feb 19.

19/02 2021
Living conditions and quality of life in adults with Duchenne muscular dystrophy – a Danish survey

A Madsen, J Rahbek, B Werge, J Marquardt, O Gredal, B Steffensen

Poster

01/01 2021
I was worried about not being good enough”. Experiences and perspectives of parents living with a neuromuscular disorder – an exploration of everyday life challenges

Handberg C, Myrup P, Højberg AL

I: Disability and Rehabilitation. 2020

01/08 2020
Working group Sitting in NMDs. 1st Sitting Workshop for neuromuscular disorders Denmark, 30 September – 1 October 2019

Groot IJ, Werlauff U

I: Neuromuscul Disord. 2020 Jul;30(7):616-619

01/07 2020
“Understanding my ALS”. Experiences and reflections of persons with amyotrophic lateral sclerosis and relatives on participation in peer group rehabilitation

Madsen, Louise Sofia, Jeppesen, Jørgen, Handberg, Charlotte.

I: Disability and Rehabilitation, Bind 41, Nr. 12, 2019, s. 1410-1418

01/12 2019
The needs and psychological distress of family caregivers after the death of the ALS patient: A systematic review.

Knudsen, L

Poster præsentation. 30^th International Symposium on ALS/MND. Perth, Western Australia.

01/12 2019
Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved

Hjorth E, Kreicbergs U, Sejersen T, Jeppesen J, Werlauff U, Rahbek J, Lövgren M

I: J Child Neurol. 2019 Feb;34(2):104-112.

01/02 2019
Evaluation of Dynamic Movement otrhoses (DMO) as a means to rellieve pain and fatigue in patients with facio-scapulo-humeral muscular dystrophy (FSHD)

Pia Z. Drivsholm, Torben Nybro, Lene Busk, Ulla Werlauff

Poster

01/10 2018
Activity and participation in young adults with Duchenne muscular dystrophy

Ann-Lisbeth Højberg

Poster

01/10 2018
How Narrative Journalistic Stories Can Communicate the Individual’s Challenges of Daily Living with Amyotrophic Lateral Sclerosis.

Jeppesen J1, Rahbek J, Gredal O, Hansen

I: HP.Patient;2014 Sep 18.

01/09 2018
Collagen XII myopathy with rectus femoris atrophy and collagen XII retention in fibroblasts

Witting N, Krag T, Werlauff U, Duno M, Oestergaard ST, Dahlqvist JR, Vissing J.

I: Muscle Nerve. 2018 Jun; 57(6):1026-1030.

01/06 2018
Congenital titinopathy: Comprehensive characterisation and pathogenic insights.

Oates EC et al.

I: Ann Neurol. 2018 Apr 25.

01/04 2018
Spatial analyses of ALS incidence in Denmark over three decades, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Verónica M. Vieira, Johnni Hansen, Ole Gredal & Marc G. Weisskopf

2018 May;19(3-4):275-284.

doi: 10.1080/21678421.2018.1432658. Epub 2018 Jan 31.

31/01 2018
Identifying and accommodating barriers to increase participation in peer-to-peer support for spouse carers of persons with ALS (PALS)

Brandstrup L, Vægter M, With H, Jeppesen J

Poster

01/12 2017
Collaboration between ALS and palliativ specialists in Denmark

Jacobsen S, N.-Pujic S, Gredal O

Poster

01/12 2017
Why people with ALS (PALS) choose not to participate in ALS patient education courses

Brandstrup L, Vægter M, With H, Jeppesen J

Poster

01/11 2017
Identifying missing links within rehabilitation services for DM1 patients with adult onset in a Danish population

Asger Frost, Bente Kristensen

Poster

01/10 2017
Adolescent and female with a neuromuscular disorder: An unexplored issue

Ann-Lisbeth Højberg, Jørgen Jeppesen

Published in the Treat-NMD Newsletter, September 2017

01/08 2017
Phenotypes, genotypes, and prevalence of congenital myopathies older than 5 years in Denmark

Witting N, Werlauff U, Duno M, Vissing J

I: Neurol Genet. 2017 Mar 21;3(2):e140.

01/03 2017
Upper Limb Clinical Outcome Group. Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM

Klingels K, Mayhew AG, Mazzone ES, Duong T, Decostre V, Werlauff U, Vroom E, Mercuri E, Goemans NM, Dev

I: Med Child Neurol. 2017 Feb;59(2):224-231

01/02 2017
Predictors of Health-Related Quality of Life in boys with Duchenne muscular dystrophy from six European countries

Otto C, Steffensen BF, Højberg AL, Barkmann C, Rahbek J, Ravens-Sieberer U, Mahoney A, Vry J, Gramsch K, Thompson R, Rodger S, Bushby K, Lochmüller H, Kirschner J.

I: J Neurol. 2017 Apr;264(4):709-723. doi: 10.1007/s00415-017-8406-2. Epub 2017 Feb 7. PMID: 28175989.

01/02 2017
Patients with long-term Myasthenia Gravis

Asger Frost

Poster

01/01 2017
Characteristics of Long-time Patients with Myasthenia Gravis in a Danish Population

Asger Frost

Poster

01/01 2017
Prevalence and phenotypes of congenital myopathy due to α-actin 1 gene mutations

Witting N, Werlauff U, Duno M, Vissing J,

I: Muscle Nerve. 2016 Mar;53(3):388-93

01/03 2016
Loss-of-function mutations in SCN4A cause severe foetal hypokinesia or ‘classical’ congenital myopathy

Zaharieva IT et al.

I: Brain. 2016 Mar;139(Pt 3):674-91

01/03 2016
Orofacial problems in patients with Duchenne muscular dystrophy and spinal muscular atrophy

Ulla Werlauff, Birgit Fynbo Steffensen, Jes Rahbek

Poster

01/02 2016
How 95 percent of all Danish ALS patients use key services of the national centre of specialised neuromuscular rehabilitation

With H, Vægter M, Brandstrup L, Jeppesen J.

Poster

01/12 2015
Problems in participation experienced by teenage girls with NMD

Ann-Lisbeth Højberg

Poster

01/10 2015
Skandinavisk konsensusprogram for Duchenne muskeldystrofi

Werlauff U m.fl

01/08 2015
Skandinavisk konsensusprogram for Spinal muskelatrofi

Red. Ulla Werlauff m.fl.

01/08 2015
Frequency and Phenotype of Myotubular Myopathy Amongst Danish Patients with Congenital Myopathy Older than 5 Years

Werlauff U, Petri, H, Witting N, Vissing, J

I: Neuromuscular Diseases 2 (2015) 167–174

01/02 2015
Parents’ Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey

Beernaert K, Lövgren M, Jeppesen J, Werlauff U, Rahbek J, Sejersen T, Kreicbergs U

I: J Child Neurol. 2019 Jan 15.

01/01 2015
Health related quality of life in European adults with DMD – results from the CARE-NMD project

BF Steffensen, U Werlauff, AL Højberg et al.

Poster

01/01 2015
Fatigue in patients with spinal muscular atrophy type II and congenital myopathies: evaluation of the fatigue severity scale

Werlauff U, Højberg A, Firla-Holme R, Steffensen BF, Vissing J.

Qual Life Res. 2014 Jun;23(5):1479-88. doi: 10.1007/s11136-013-0565-8. Epub 2013 Nov 9. PMID: 24214178.

23/06 2014
Frequency and phenotype of patients carrying TPM2 and TPM3 gene mutations in a cohort of 94 patients with congenital myopathy

Citirak G, Witting N, Duno M, Werlauff U, Petri H, Vissing J.

Neuromuscul Disord. 2014 Apr;24(4):325-30. doi: 10.1016/j.nmd.2013.12.008. Epub 2014 Jan 3. PMID: 24507666.

24/04 2014
Frequency and phenotype of patients carrying TPM2 and TPM3 gene mutations in a cohort of 94 patients with congenital myopathy

Citirak G, Witting N, Duno M, Werlauff U, Petri H, Vissing J

I: Neuromuscul Disord. 2014 Apr;24(4):325-30

01/04 2014
International Coordinating Committee for SMA Clinical Trials Rasch Task Force. Rasch analysis of clinical outcome measures in spinal muscular atrophy

Cano SJ, Mayhew A, Glanzman AM, Krosschell KJ, Swoboda KJ, Main M, Steffensen BF et al.

I: Muscle Nerve. 2014 Mar;49(3):422-30.

01/03 2014
Fatigue in patients with spinal muscular atrophy type II and congenital myopathies: evaluation of the fatigue severity scale

Werlauff U, Højberg A, Firla-Holme R, Steffensen BF

I: Qual life Res 2014; 23 (5)1479-88

01/01 2014
The applicability of four clinical methods to evaluate arm and hand function in all stages of spinal muscular atrophy type II

Werlauff U, Fynbo Steffensen B

I: Disabil Rehabil. 2014;36(25):2120-6

01/01 2014
Mapping the differences in care for 5,000 spinal muscular atrophy patients, a survey of 24 national registries in North America, Australasia and Europe

Bladen CL et al.

I: J Neurol. 2014 Jan;261(1):152-63.

01/01 2014
Physical ability and health in a non-steroid population of 77 adult patients with Duchenne muscular dystrophy

B Werge, J Rahbek, A Madsen, J Marquardt, U Werlauff, B Steffensen

Poster

01/01 2014
184th ENMC International Workshop: pain and fatigue in neuromuscular disorders: 20-22 May 2011, Naarden, The Netherlands

de Groot IJ, Voet NB, van Middendorp H, Knoop HJ, Rahbek J, van Engelen BG.

Neuromuscul Disord. 2013 Dec;23(12):1028-32.

23/12 2013
The TREAT-NMD Duchenne muscular dystrophy registries: conception, design, and utilization by industry and academia

Bladen CL et al.

I: Hum Mutat. 2013 Nov;34(11):1449-57

01/11 2013
Age-period-cohort analysis of trends in amyotrophic lateral sclerosis in Denmark, 1970-2009.

Seals RM, Hansen J, Gredal O, Weisskopf MG.

I: Am J Epidemiol. 2013 Oct 15;178(8):1265-71.

01/10 2013
Dementia in amyotrophic lateral sclerosis

Gredal O, Nielsen K, Tarp T, Ehrenfels S.

Ugeskrift for læger

01/10 2013
Translation and validation of the Egen Klassifikation scale for the Spanish population: functional assessment for non-ambulatory individuals with Duchenne’s muscular dystrophy and spinal muscular atrophy

Fagoaga J, Girabent-Farrés M, Bagur-Calafat C, Febrer A, Steffensen BF.

Rev Neurol. 2013 Jun 1;56(11):555-61.

01/06 2013
The European NeuroMuscular Centre (ENMC): 20 years on …

van Engelen B, Zollinger D, Pohlschmidt M, Ambrosini A, Rahbek J.Neuromuscul Disord. 2013 Apr;23(4):375-6

23/04 2013
Rehabilitering med historier. En socio-narratologisk undersøgelse af journalistisk fortælling som metode til at forstå patienten som medmenneske

Jeppesen J. Ph.d.-afhandling

Syddansk Universitet, Det Sundhedsvidenskabelige Fakultet, 2013

01/01 2013
Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: “translating” the translational

McCormack P et al.

PLoS Curr. 2013 Jan 10;5.

01/01 2013
Change in muscle strength over time in spinal muscular atrophy types II and III. A long-term follow-up study

Werlauff U, Vissing J, Steffensen BF

I: Neuromuscul Disord 2012,12:(1069-74)

01/12 2012
Current care practice in Duchenne Muscular Dystrophy in Europe – Results of the CARE-NMD cross-sectional study

Julia Vry, Kathrin Gramsch, B. Steffensen, Jes Rahbek, K. Bushby, H. Lochmueller, S.Rodger, S.Doerken, J. Kirschner

Poster

01/10 2012
Examining the effect of networks for students with special educational needs

Højberg, Ann-Lisbeth, Jeppesen, Jørgen

I: Journal of Disability Research, Vol. 14, No 2, 2012, p.126-147.

01/06 2012
Novel TARDBP mutations in Nordic ALS patients

Chiang HH, Andersen PM, Tysnes OB, Gredal O, Christensen PB, Graff C.

I: J Hum Genet. 2012 May;57(5):316-9.

01/05 2012
Journalistisk fortælling kan øge sundhedsprofessionel indsigt i rehabilitering.

Jeppesen J, Gredal O, Rahbek J, Hansen H.P. (2012).

I: Ugeskrift for Læger, 174: 2079-2081.

01/01 2012
Novel heterozygous nonsense mutation of the OPTN gene segregating in a Danish family with ALS

Tümer Z, Bertelsen B, Gredal O, Magyari M, Nielsen KC, Lucamp, Grønskov K, Brøndum-Nielsen K.

I: Neurobiol Aging. 2012 Jan;33(1):208.

01/01 2012
Does muscle strength deteriorate in spinal muscular atrophy type 2 and 3

Ulla Werlauff, John Vissing, Birgit F. Steffensen

Poster

01/10 2011
Longitudinal data analysis: an application to construction of a natural history profile of Duchenne muscular dystrophy

Hyde SA, Steffensen BF, Fløytrup I, Glent S, Kroksmark AK, Salling B, Werlauff U, Erlandsen M

I: Neuromuscul Disord. 2001 Mar;11(2):165-70

01/03 2011
Narrative journalism as complementary inquiry

Jeppesen, J & Hansen, H.P.

I: Qualitative Studies 2011:2 (2): 98-117

01/02 2011
Consensus statement on standard of care for congenital muscular dystrophies

Wang CH et al. International Standard of Care Committee for Congenital Muscular Dystrophy.

I: J Child Neurol. 2010 Dec;25(12):1559-81.

01/12 2010
Living with severe physical impairment, Duchenne’s muscular dystrophy and home mechanical ventilation

Dreyer PS, Steffensen BF, Pedersen BD.

I: Int J Qual Stud Health Well-being. 2010 Aug 2;5.

01/08 2010
A randomized comparative study of two methods for controlling Tendo Achilles contracture in Duchenne muscular dystrophy

Hyde SA, Fløytrup I, Glent S, Kroksmark AK, Salling B, Steffensen BF, Werlauff U, Erlandsen M

I: Neuromuscul Disord. 2000 Jun;10(4-5):257-63

01/06 2010
Indlæring hos drenge med Duchennes muskeldystrofi

Kjærgård H, Støvring B, Tromborg, A, Højberg A-L

Artikel trykt i Pædagogisk psykologisk tidsskrift 2010,5: 384-395.

01/05 2010
Respiratorbehandling til patienter med motor neuron disease – hvad har betydning for patientens til- og fravalg

Møller J, Timm H, Felding M.

I: OMSORG, Nordisk Tidsskrift for Palliativ Medicin nr. 4/2010.

01/04 2010
Life with home mechanical ventilation for young men with Duchenne muscular dystrophy

Dreyer PS, Steffensen BF, Pedersen BD.

I: J Adv Nurs. 2010 Apr;66(4):753-62.

01/04 2010
Living and ageing with spinal muscular atrophy type 2: observations among an unexplored patient population

Jeppesen J, Madsen A, Marquardt J, Rahbek

I: J. Dev Neurorehabil. 2010 Feb;13(1):10-8.

01/02 2010
Physical characteristics and applicability of standard assessment methods in a total population of spinal muscular atrophy type II patients

Werlauff U, Steffensen BF, Bertelsen S, Floytrup I, Kristensen B, Werge B

I: Neuromuscul Disord. 2010, 20(34-43)

01/01 2010
How well is functional ability related to muscle strength in spinal muscular atrophy II

Ulla Werlauff

Poster

01/01 2010
Developing and maintaining of user-defined personal competencies among young adults with congenital physical disability

Ann-Lisbeth Højberg, Birgit Fynbo Steffensen

Developmental Neurorehabilitation, 11 March 2008

01/03 2008
Is a reduced muscle test sufficient to give and overall impression of muscle function in spinal muscular atrophy II?

U Werlauff, S Berthelsen, I Fløjtrup, B Kristensen, B Steffensen, B Werge

01/01 2008
Like everybody else

Anny Madsen

01/01 2008
Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population

Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen

I: J. Pediatr Rehabil. 2005 Jan-Mar;8(1):17-28.

01/01 2005
The Duchenne muscular dystrophy population in Denmark, 1977-2001: prevalence, incidence and survival in relation to the introduction of ventilator use

Jeppesen J, Green A, Steffensen BF, Rahbek J.

I: Neuromuscul Disord. 2003 Dec;13(10):804-12.

01/12 2003
Physical capacity in non-ambulatory people with Duchenne muscular dystrophy or spinal muscular atrophy: a longitudinal study

Steffensen BF, Lyager S, Werge B, Rahbek J, Mattsson E. Dev

I: Med Child Neurol. 2002 Sep;44(9):623-32

01/09 2002
Reliability of the EK scale, a functional test for non-ambulatory persons with Duchenne dystrophy

Steffensen BF, Hyde SA, Attermann J, Mattsson E.

Advances in Physiotherapy 2002;4:37-47.

01/04 2002
Fracture risk in patients with muscular dystrophy and spinal muscular atrophy

Vestergaard P, Glerup H, Steffensen BF, Rejnmark L, Rahbek J, Moseklide L.

I: J Rehabil Med. 2001 Jul;33(4):150-5.

01/07 2001
Validity of the EK scale: a functional assessment of non-ambulatory individuals with Duchenne muscular dystrophy or spinal muscular atrophy

Steffensen B, Hyde S, Lyager S, Mattsson E.

Physiother Res Int. 2001;6(3):119-34.

01/03 2001
Indicators of Need for Mechanical Ventilation in Duchenne Muscular Dystrophy and Spinal Atrophy

Lyager S, Steffensen B, Juhl B.

CHEST 1995; vol. 108: 779-785.

01/09 1995
Tilværelsen for permanente respiratorbrugere med muskelsvind, set med brugerøjne. Information, valg og livskvalitet

Jørs E, Steffensen B.

I: Ugeskrift for Læger 1992; 154: 783-88.

01/01 1992
Muscular dystrophy and exercise

Andersen R, Mälkiä E, Steffensen BF.

I: Ugeskr Laeger. 1989 Jun 5;151(23):1483-4.

05/06 1989
Virkning af respirationsmuskeltræning hos normale og patienter med nedsat respirationsmuskelkraft

Estrup C, Lyager S, Næraa N, Olsen C.

I: Ugeskrift for Læger 1986; 148/22: 1345-1349.

01/01 1986
Effect of Respiratory Muscle Training in Patients with Neuromuscular Diseases and in Normals

Estrup C, Lyager S, Næraa N, Olsen C.

I: Respiration 1986; 50:36-43.

01/01 1986
Cardiopulmonary Response to Exercise in Patients with Neuromuscular Diseases

Lyager S, Næraa N, Pedersen OF.

I: Respiration 1984; 45: 89-99.

01/01 1984
Alle publikationer af Lone Knudsen

31/12 1980
Alle publikationer af Charlotte Handberg

31/12 1980
Well-being and care burden of close relatives to persons with ALS-FTD

Hovmann B, Gredal O

Poster
The role of patient registries in an international study of care in Duchenne muscular dystrophy (Poster)

Rodger S et al.
Egen Klassifikation (EK) revisited in spinal muscular atrophy

B Steffensen, et al.

Poster
Pain and fatigue in manifesting carriers of Duchenne and Becker muscular dystrophy

P.Z. Drivsholm, U. Werlauff

Poster
Urinating when away from home – a major physical and mental problem for women with neuromuscular diseases – a neglegted issue

Bente Kristensen, Birgit Werge

Poster
Sid godt – hele livet (Poster)

Helle Munkholm

Lone Bech Christensen

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