Ulla Werlauff

Ulla Werlauff

Fysioterapeut, MSc, ph.d, forsker
ulwe@rcfm.dk
- Leder af Forskning og udvikling
- Projektledelse og-vejledning
- Undersøgelsesredskaber
- Formidling og undervisning
- Metodekundskaber

Seneste publikationer

Burden of Disease of Duchenne Muscular Dystrophy in Denmark – A National Register-Based Study of Individuals with Duchenne Muscular Dystrophy and their Closest Relatives
People with neuromuscular diseases and their relatives’ perspectives on challenges in everyday life and healthcare
HAP-PEE study 1 – Challenges faced by women with neuromuscular diseases when having to urinate away from home (poster)
HAP-PEE study II – Going when you have to” – problems in urinating when away from home as a woman with NMD (poster)

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Seneste projekter

Vis alle projekter

Seneste aktiviteter

Koordinator og kontaktperson for oversættelser af EK-skalaen
Deltager i international arbejdsgruppe om udvikling af målemetoder til undersøgelse af bulbær funktion (spise, synke, tale) hos personer med spinal muskelatrofi
Medlem af Medicinrådets fagudvalg for behandling af medicin til spinal muskelatrofi og Duchenne muskeldystrofi
Censor og vejledning, Bachelorstuderende på Fysioterapeut-uddannelse

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Publikationer

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
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
Cross-sectoral collaboration among hospital professionals on rehabilitation for patients with neuromuscular diseases

Charlotte Handberg, Ulla Werlauff

30/03 2023
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
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
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
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
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
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
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
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
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

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

01/04 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
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
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
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
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
How well is functional ability related to muscle strength in spinal muscular atrophy II

Ulla Werlauff

Poster

01/01 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
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
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

Projekter

Aktiviteter

Koordinator og kontaktperson for oversættelser af EK-skalaen
Deltager i international arbejdsgruppe om udvikling af målemetoder til undersøgelse af bulbær funktion (spise, synke, tale) hos personer med spinal muskelatrofi
Medlem af Medicinrådets fagudvalg for behandling af medicin til spinal muskelatrofi og Duchenne muskeldystrofi
Censor og vejledning, Bachelorstuderende på Fysioterapeut-uddannelse
2013, kapitelforfatter ”Pædiatrisk fysioterapi”, Munkgaards forlag.
2001, kapitelforfatter ”Det Myasteniske puslespil”, Muskelsvindfonden
Netværk om outcome measures for DMD and SMA

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