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

المصدر: Werlauff , U , Handberg , C , Kristensen , B , Glerup , S , Pharao , A V , Strøm , J & Jensen , B T 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 ' , Journal of Neuromuscular Diseases , vol. 11 , no. 4 , pp. 829-838 . https://doi.org/10.3233/JND-230241

مصطلحات موضوعية: Activities of Daily Living, Adolescent, Adult, Aged, Denmark/epidemiology, Female, Humans, Lower Urinary Tract Symptoms/epidemiology, Middle Aged, Neuromuscular Diseases/epidemiology, Prevalence, Quality of Life, Surveys and Questionnaires, Urination, Young Adult, participation, Neuromuscular diseases, rehabilitation, women's health, urinary tract infection, toilet facilities

الاتاحة: https://pure.au.dk/portal/en/publications/a8516fdd-cc97-48f0-944e-856343665eb8
https://doi.org/10.3233/JND-230241
http://www.scopus.com/inward/record.url?scp=85198001169&partnerID=8YFLogxK

المؤلفون: Rudolfsen, Jan Håkon, Vissing, John, Werlauff, Ulla, Olesen, Charlotte, Illum, Niels, Olsen, Jens, Poulsen, Peter Bo, Strand, Mette, Born, Alfred Peter

المصدر: Rudolfsen , J H , Vissing , J , Werlauff , U , Olesen , C , Illum , N , Olsen , J , Poulsen , P B , Strand , M & Born , A P 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 ' , Journal of Neuromuscular Diseases , vol. 11 , no. 2 , pp. 443-457 . https://doi.org/10.3233/JND-230133

مصطلحات موضوعية: cost, cost of illness, duchenne, education, incidence, Muscular dystrophy, parents, population, prevalence, productivity, registers, siblings

Relation: https://pure.au.dk/portal/en/publications/65a8905b-fc9f-42a0-8c87-a1e3ff6ef851

الاتاحة: https://pure.au.dk/portal/en/publications/65a8905b-fc9f-42a0-8c87-a1e3ff6ef851
https://doi.org/10.3233/JND-230133

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

المصدر: Handberg , C , Kristensen , B , Jensen , B T , Glerup , S , Pharao , A V , Strøm , J & Werlauff , U 2024 , ' Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home ' , Global Qualitative Nursing Research , vol. 11 , pp. 1-12 . https://doi.org/10.1177/23333936241262445

مصطلحات موضوعية: Denmark, bladder health, communication, healthcare professionals, nursing care, urinate

الاتاحة: https://pure.au.dk/portal/en/publications/6f6b3b2d-7546-403c-be5c-b0fa2133ec22
https://doi.org/10.1177/23333936241262445
http://www.scopus.com/inward/record.url?scp=85196732479&partnerID=8YFLogxK

المؤلفون: Handberg, Charlotte, Werlauff, Ulla

المصدر: Handberg , C & Werlauff , U 2023 , ' Cross-sectoral collaboration among hospital professionals on rehabilitation for patients with neuromuscular diseases ' , Neurodegenerative Disease Management , vol. 13 , no. 3 , pp. 161-175 . https://doi.org/10.2217/nmt-2022-0024

مصطلحات موضوعية: Hospitals, Humans, Neuromuscular Diseases

الاتاحة: https://pure.au.dk/portal/da/publications/crosssectoral-collaboration-among-hospital-professionals-on-rehabilitation-for-patients-with-neuromuscular-diseases(26e6a907-6423-4cf3-803c-c86f99cb9cd4).html
https://doi.org/10.2217/nmt-2022-0024

المؤلفون: Young, Sally Dunaway, McGrattan, Katlyn, Johnson, Emily, van der Heul, Marise, Duong, Tina, Bakke, Merete, Werlauff, Ulla, Pasternak, Amy, Cattaneo, Camilla, Hoffman, Katie, Fanelli, Lavinia, Breaks, Anne, Allison, Kristen, Baranello, Giovanni, Finkel, Richard, Coratti, Giorgia, Lofra, Robert Muni

المصدر: Young , S D , 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 , R M 2023 , ' Development of an International SMA Bulbar Assessment for Inter-professional Administration ' , Journal of Neuromuscular Diseases , vol. 10 , no. 4 , pp. 639-652 ....

وصف الملف: application/pdf

الاتاحة: https://curis.ku.dk/portal/da/publications/development-of-an-international-sma-bulbar-assessment-for-interprofessional-administration(fc7cda53-67bc-4535-8736-6c3dd1b562b3).html
https://doi.org/10.3233/JND-221672
https://curis.ku.dk/ws/files/361587457/jnd_2023_10_4_jnd_10_4_jnd221672_jnd_10_jnd221672.pdf

المؤلفون: Handberg, Charlotte, Werlauff, Ulla

المصدر: Neurodegenerative Disease Management ; volume 13, issue 5, page 289-302 ; ISSN 1758-2024 1758-2032

الاتاحة: http://dx.doi.org/10.2217/nmt-2023-0008
https://www.tandfonline.com/doi/pdf/10.2217/nmt-2023-0008

المؤلفون: Hjorth, Elin, Kreicbergs, Ulrika, Sejersen, Thomas, Jeppesen, Jørgen, Werlauff, Ulla, Rahbek, Jes, Lövgren, Malin

المصدر: Journal of Child Neurology. 34(2):104-112

مصطلحات موضوعية: Care coordination, Health care professional, Neuromuscular disease, Parental perception, Pediatric palliative care, Spinal muscular atrophy

وصف الملف: print

URL الوصول: https://urn.kb.se/resolve?urn=urn:nbn:se:esh:diva-7299
https://doi.org/10.1177/0883073818811544

المؤلفون: Møller, Louise Abildgaard, Martinsen, Bente, Werlauff, Ulla, Dreyer, Pia

المصدر: Møller , L A , Martinsen , B , Werlauff , U & Dreyer , P 2022 , ' Participation amongst people ageing with neuromuscular disease : a qualitative study of lived experiences ' , Nursing Open , vol. 9 , no. 6 , pp. 2675-2682 . https://doi.org/10.1002/nop2.966

مصطلحات موضوعية: ageing, hermeneutics, narratives, neuromuscular disease, participation, qualitative research, transitional care, Neuromuscular Diseases, Humans, Aging, Longitudinal Studies

Relation: https://pure.au.dk/portal/en/publications/83d9f004-bf8c-4332-8851-bd8d671b033e

الاتاحة: https://pure.au.dk/portal/en/publications/83d9f004-bf8c-4332-8851-bd8d671b033e
https://doi.org/10.1002/nop2.966

المؤلفون: Handberg, Charlotte, Werlauff, Ulla

المصدر: Handberg , C & Werlauff , U 2022 , ' Cross-sectorial collaboration on policy-driven rehabilitation care models for persons with neuromuscular diseases : reflections and behavior of community-based health professionals ' , BMC Health Services Research , vol. 22 , no. 1 , 1168 . https://doi.org/10.1186/s12913-022-08557-3

مصطلحات موضوعية: Collaboration, Community care, Coordination¸ policy decisions, Culture, Fundamental care, Healthcare professionals, Neuromuscular diseases, Organization, Rehabilitation

الاتاحة: https://pure.au.dk/portal/da/publications/crosssectorial-collaboration-on-policydriven-rehabilitation-care-models-for-persons-with-neuromuscular-diseases(dbf5f403-eb43-4b21-8c82-c231e07f2477).html
https://doi.org/10.1186/s12913-022-08557-3

المؤلفون: Handberg, Charlotte, Werlauff, Ulla, Højberg, Ann-Lisbeth

المصدر: Handberg , C , Werlauff , U & Højberg , A-L 2022 , ' Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids ' , Global Qualitative Nursing Research , vol. 9 . https://doi.org/10.1177/23333936221094858

مصطلحات موضوعية: corticosteroids, Denmark, Duchenne muscular dystrophy, interpretive description, rehabilitation, sense of coherence

الاتاحة: https://pure.au.dk/portal/da/publications/perspectives-on-everyday-life-challenges-of-danish-young-people-with-duchenne-muscular-dystrophy-dmd-on-corticosteroids(9f7736a0-c5e9-4482-92c3-e8bac5b2c991).html
https://doi.org/10.1177/23333936221094858
http://www.scopus.com/inward/record.url?scp=85129294531&partnerID=8YFLogxK

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

المصدر: Journal of Neuromuscular Diseases; 2024, Vol. 11 Issue 4, p829-838, 10p

المؤلفون: Allergodt, Kristin, Dreyer, Pia, Werlauff, Ulla, Handberg, Charlotte

المصدر: Allergodt , K , Dreyer , P , Werlauff , U & Handberg , C 2024 , ' Living with adult-onset myotonic dystrophy type 1 : a scoping review ' , Disability and Rehabilitation , pp. 1-12 . https://doi.org/10.1080/09638288.2024.2396063

مصطلحات موضوعية: International Classification of Functioning, Disability and Health, Myotonic dystrophy, caregivers, neuromuscular disease, rehabilitation, scoping review

الاتاحة: https://pure.au.dk/portal/en/publications/3e95ba9f-cd33-4a6e-81dd-2ecd430bc77c
https://doi.org/10.1080/09638288.2024.2396063
http://www.scopus.com/inward/record.url?scp=85203244372&partnerID=8YFLogxK

المؤلفون: Handberg, Charlotte, Werlauff, Ulla, Højberg, Ann-Lisbeth, Knudsen, Lone

المصدر: Handberg , C , Werlauff , U , Højberg , A-L & Knudsen , L 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 ' , PLOS ONE , vol. 16 , no. 6 , e0253715 . https://doi.org/10.1371/journal.pone.0253715

مصطلحات موضوعية: LONELINESS, RELIABILITY

الاتاحة: https://pure.au.dk/portal/en/publications/c1804ccc-ccfa-45fd-9336-1e145e61b9be
https://doi.org/10.1371/journal.pone.0253715

المؤلفون: Hjorth, Elin, Kreicbergs, Ulrika, Sejersen, Thomas, Werlauff, Ulla, Rahbek, Jes, Lövgren, Malin

المساهمون: Gålö Foundation, Freja Donation, Muskelsvindfonden, Danmark

المصدر: Journal of Child Health Care ; volume 26, issue 3, page 407-421 ; ISSN 1367-4935 1741-2889

الاتاحة: https://doi.org/10.1177/13674935211015561
https://journals.sagepub.com/doi/pdf/10.1177/13674935211015561
https://journals.sagepub.com/doi/full-xml/10.1177/13674935211015561

المؤلفون: Rudolfsen, Jan Håkon, Vissing, John, Werlauff, Ulla, Olesen, Charlotte, Illum, Niels, Olsen, Jens, Poulsen, Peter Bo, Strand, Mette, Born, Alfred Peter

المصدر: Journal of Neuromuscular Diseases; 2024, Vol. 11 Issue 2, p443-457, 15p

المؤلفون: Allergodt, Kristin, Handberg, Charlotte, Frost, Asger, Werlauff, Ulla

المصدر: Allergodt , K , Handberg , C , Frost , A & Werlauff , U 2023 , ' A retrospective study of needs and interventions among patients with myotonic dystrophy type 1 in Denmark referred to rehabilitation in the period 2000-2019 ' , Journal of Evaluation in Clinical Practice , vol. 29 , no. 1 , pp. 39-48 . https://doi.org/10.1111/jep.13706

مصطلحات موضوعية: International Classification of Functioning, delivery of health care, Disability and Health, health services, myotonic dystrophy, neuromuscular diseases, rehabilitation

الاتاحة: https://pure.au.dk/portal/da/publications/a-retrospective-study-of-needs-and-interventions-among-patients-with-myotonic-dystrophy-type-1-in-denmark-referred-to-rehabilitation-in-the-period-20002019(5cbb9427-8df0-4426-9a3d-58e9561ebb26).html
https://doi.org/10.1111/jep.13706
http://www.scopus.com/inward/record.url?scp=85130604565&partnerID=8YFLogxK

المؤلفون: Alfano, Lindsay N., James, Meredith K., Ramdharry, Gita M., Lowes, Linda P., Coats, Julie, Corderí, José, Costello, Annette, Eagle, Michelle, Elseed, Maha, Gaeta, Alessandra, Gordish-Dressman, Heather, Davies, Elin Haf, Human, Anri, Knudsen, Lone, Leffler, Mindy, Levy, Jennifer, Lilien, Charlotte, Mancini, Maria, Mayhew, Anna, McGrattan, Katlyn, Muni-Lofra, Robert, Peck, Allison, Peck, Nathan, Prada, Valeria, Pylarinou, Hara, Rose, Kristy, Werlauff, Ulla

المساهمون: European Neuromuscular Centre

المصدر: Neuromuscular Disorders ; volume 33, issue 4, page 339-348 ; ISSN 0960-8966

الاتاحة: http://dx.doi.org/10.1016/j.nmd.2023.02.011
https://api.elsevier.com/content/article/PII:S0960896623000317?httpAccept=text/xml
https://api.elsevier.com/content/article/PII:S0960896623000317?httpAccept=text/plain

المؤلفون: Werlauff, Ulla, Højberg, A., Firla-Holme, R., Steffensen, B. F., Vissing, J.

المصدر: Quality of Life Research, 2014 Jun 01. 23(5), 1479-1488.

URL الوصول: https://www.jstor.org/stable/24726351

المؤلفون: Oates, Emily, Jones, Kristi, J, Donkervoort, Sandra, Charlton, Amanda, Brammah, Susan, Smith, John, Ware, James, Yau, Kyle, Swanson, Lindsay, Whiffin, Nicola, Peduto, Anthony, Bournazos, Adam, Waddell, Leigh, B., Farrar, Michelle, Sampaio, Hugo, Teoh, Hooi Ling, Lamont, Phillipa, Mowat, David, Fitzsimons, Robin, Corbett, Alastair, Ryan, Monique, O'Grady, Gina, Sandaradura, Sarah, Ghaoui, Roula, Joshi, Himanshu, Marshall, Jamie, Nolan, Melinda, Kaur, Simranpreet, Punetha, Jaya, Töpf, Ana, Harris, Elizabeth, Bakshi, Madhura, Genetti, Casie, Marttila, Minttu, Werlauff, Ulla, Streichenberger, Nathalie, Pestronk, Alan, Mazanti, Ingrid, Pinner, Jason, Vuillerot, Carole, Grosmann, Carla, Camacho, Ana, Mohassel, Payam, Leach, Meganne, Foley, a Reghan, Bharucha-Goebel, Diana, X, Collins, James, Connolly, Anne, Gilbreath, Heather, Iannaccone, Susan, Castro, Diana, Cummings, Beryl, Webster, Richard, Lazaro, Leila, Vissing, John, Coppens, Sandra, Deconinck, Nicolas, Luk, Ho-Ming, Thomas, Neil, Foulds, Nicola, Illingworth, Marjorie, Ellard, Sian, Mclean, Catriona, Phadke, Rahul, Ravenscroft, Gianina, Witting, Nanna, Hackman, Peter, Richard, Isabelle, Cooper, Sandra, T., Kamsteeg, Erik-Jan, Hoffman, Eric, Bushby, Kate, Straub, Volker, Udd, Bjarne, Ferreiro, Ana, North, Kathryn, N., Clarke, Nigel, F., Lek, Monkol, Beggs, Alan, H., Bönnemann, Carsten, Macarthur, Daniel, Granzier, Henk, Davis, Mark, Laing, Nigel, G., Foley, A. Reghan, Bharucha‐goebel, Diana, Luk, Ho‐ming, Kamsteeg, Erik‐jan

المساهمون: Hospices Civils de Lyon (HCL), Institut NeuroMyoGène (INMG), Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), Washington University in Saint Louis (WUSTL), Hôpital Femme Mère Enfant CHU - HCL (HFME), Université de Lyon, Centre Hospitalier de la Côte Basque (CHCB), Approches génétiques intégrées et nouvelles thérapies pour les maladies rares (INTEGRARE), École Pratique des Hautes Études (EPHE), Université Paris Sciences et Lettres (PSL)-Université Paris Sciences et Lettres (PSL)-Université d'Évry-Val-d'Essonne (UEVE)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Généthon, Unité de Biologie Fonctionnelle et Adaptative (BFA (UMR_8251 / U1133)), Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS), CHU Pitié-Salpêtrière AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)

المصدر: ISSN: 0364-5134.

مصطلحات موضوعية: MESH: Cardiomyopathy, Dilated, MESH: Connectin, MESH: Female, MESH: Humans, MESH: Male, MESH: Muscle Proteins, MESH: Muscle, Skeletal, MESH: Mutation, MESH: Phenotype, MESH: Protein Isoforms, [SDV.BBM.BM]Life Sciences [q-bio]/Biochemistry, Molecular Biology/Molecular biology, [SDV.BIO]Life Sciences [q-bio]/Biotechnology, [SDV.GEN.GH]Life Sciences [q-bio]/Genetics/Human genetics

Relation: info:eu-repo/semantics/altIdentifier/pmid/29691892; hal-02333009; https://hal.science/hal-02333009; https://hal.science/hal-02333009/document; https://hal.science/hal-02333009/file/ANA-83-1105.pdf; PUBMED: 29691892; PUBMEDCENTRAL: PMC6105519

الاتاحة: https://hal.science/hal-02333009
https://hal.science/hal-02333009/document
https://hal.science/hal-02333009/file/ANA-83-1105.pdf
https://doi.org/10.1002/ana.25241

المؤلفون: Dunaway Young, Sally, McGrattan, Katlyn, Johnson, Emily, van der Heul, Marise, Duong, Tina, Bakke, Merete, Werlauff, Ulla, Pasternak, Amy, Cattaneo, Camilla, Hoffman, Katie, Fanelli, Lavinia, Breaks, Anne, Allison, Kristen, Baranello, Giovanni, Finkel, Richard, Coratti, Giorgia, Lofra, Robert Muni

المصدر: Journal of Neuromuscular Diseases; 2023, Vol. 10 Issue 4, p639-652, 14p