المؤلفون: Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl, Stephan Klebe

المصدر: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-14 (2024)

مصطلحات موضوعية: Health-related quality of life, Hereditary spastic paraplegia, Patient-centered outcome measure, Medicine

وصف الملف: electronic resource

Relation: https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/4624ec559bc4406a87707f259b4728b7

المؤلفون: Grams, Morgan E, Surapaneni, Aditya, Appel, Lawrence J, Lash, James P, Hsu, Jesse, Diamantidis, Clarissa J, Rosas, Sylvia E, Fink, Jeffrey C, Scialla, Julia J, Sondheimer, James, Hsu, Chi-Yuan, Cheung, Alfred K, Jaar, Bernard G, Navaneethan, Sankar, Cohen, Debbie L, Schrauben, Sarah, Xie, Dawei, Rao, Pandu, Feldman, Harold I, Go, Alan S, He, Jiang, Rahman, Mahboob, Townsend, Raymond R

المصدر: Nephrology Dialysis Transplantation. 36(9)

مصطلحات موضوعية: Clinical Research, Clinical Trials and Supportive Activities, Kidney Disease, Aging, Heart Disease, Cardiovascular, Management of diseases and conditions, 7.1 Individual care needs, Renal and urogenital, Good Health and Well Being, Cohort Studies, Disease Progression, Female, Glomerular Filtration Rate, Humans, Kidney Failure, Chronic, Male, Middle Aged, Patient Reported Outcome Measures, Quality of Life, Renal Insufficiency, Chronic, albuminuria, cardiovascular, CKD, ESKD, patient-centered outcome, CRIC study investigators, Clinical Sciences, Urology & Nephrology

وصف الملف: application/pdf

URL الوصول: https://escholarship.org/uc/item/6111m38p

المؤلفون: Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl, Stephan Klebe

مصطلحات موضوعية: Medicine, Sociology, Immunology, Cancer, Science Policy, Space Science, Biological Sciences not elsewhere classified, Health-related quality of life, Hereditary spastic paraplegia, Patient-centered outcome measure

Relation: https://figshare.com/articles/journal_contribution/Additional_file_1_of_Development_and_validation_of_TreatHSP-QoL_a_patient-reported_outcome_measure_for_health-related_quality_of_life_in_hereditary_spastic_paraplegia/24934036

الاتاحة: https://doi.org/10.6084/m9.figshare.24934036.v1
https://figshare.com/articles/journal_contribution/Additional_file_1_of_Development_and_validation_of_TreatHSP-QoL_a_patient-reported_outcome_measure_for_health-related_quality_of_life_in_hereditary_spastic_paraplegia/24934036

المؤلفون: Atalaia, Antonio, Wandrei, Dagmar, Lalout, Nawel, Thompson, Rachel, Tassoni, Adrian, Athanasiou, Dimitrios, Baker, Suzie-Ann, Sakellariou, Paraskevi, Paliouras, Georgios, D’angelo, Carla, Horvath, Rita, Mancuso, Michelangelo, van der Beek, Nadine, Kornblum, Cornelia, Kirschner, Janbernd, Pareyson, Davide, Bassez, Guillaume, Blacas, Laura, Jacoupy, Maxime, Eng, Catherine, Lamy, François, Plançon, Jean-Philippe, Haberlova, Jana, Brusse, Esther, Hoeijmakers, Janneke, G J, de Visser, Marianne, Claeys, Kristl, G, Paradas, Carmen, Toscano, Antonio, Silani, Vincenzo, Gyenge, Melinda, Reviers, Evy, Hamroun, Dalil, Vroom, Elisabeth, Wilkinson, Mark, D, Lochmuller, Hanns, Evangelista, Teresinha

المساهمون: CHU Pitié-Salpêtrière AP-HP, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Centre de recherche en Myologie – U974 SU-INSERM, Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU), Universitäts Klinikum Freiburg = University Medical Center Freiburg (Uniklinik), Radboud University Medical Center Nijmegen (RadboudUMC), Children's hospital of Eastern Ontario Research Institute Ottawa, canada (CHEO), World Duchenne Organization (WDO), Duchenne Data Foundation (DDF), European Reference Network for Rare Neuromuscular Diseases EURO-NMD (EURO-NMD), Institut de Myologie, Commissariat à l'énergie atomique et aux énergies alternatives (CEA)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Association française contre les myopathies (AFM-Téléthon)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS), Department of Clinical Neurosciences Cambridge, University of Cambridge UK (CAM), Azienda Ospedaliera Universitaria Pisana, Erasmus University Medical Center Rotterdam (Erasmus MC), Universitätsklinikum Bonn (UKB), Instituto Neurologico C. Besta, Association française contre les myopathies (AFM-Téléthon), European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN), University Hospital Motol Prague, Maastricht University Medical Centre (MUMC), Maastricht University Maastricht, Amsterdam University Medical Centers (Amsterdam UMC), University Hospitals Leuven Leuven, Hospital Universitario Virgen del Rocío Sevilla, Università degli Studi di Messina = University of Messina (UniMe), epartment of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, ALS Liga Belgium, Hôpital la Colombière CHU Montpellier, Centre Hospitalier Régional Universitaire Montpellier (CHRU Montpellier), World Duchenne Organisation (WDO), Centro de Biotechnologia y Genomica de Plantas (UPM-INIA) and ETSI Agronomos, Universidad Politécnica de Madrid (UPM), EU 3rd Health Programme and three leading patient organisations, World Duchenne Organisation, Duchenne Data Foundation and AFMTéléthon (Grant agreement 947598)

المصدر: ISSN: 1750-1172 ; Orphanet Journal of Rare Diseases ; https://hal.sorbonne-universite.fr/hal-04460667 ; Orphanet Journal of Rare Diseases, 2024, 19 (1), pp.66. ⟨10.1186/s13023-024-03059-3⟩.

مصطلحات موضوعية: Neuromuscular Diseases, Registry, EURO-NMD, European Reference Network, FAIR DATA, Registry Hub, Patient centered outcome, Registry Registry Hub Neuromuscular Diseases Rare Diseases FAIR data, Rare Diseases, [SDV]Life Sciences [q-bio], [INFO.INFO-DB]Computer Science [cs]/Databases [cs.DB], [SDV.GEN.GH]Life Sciences [q-bio]/Genetics/Human genetics, [SDV.OT]Life Sciences [q-bio]/Other [q-bio.OT]

الاتاحة: https://hal.sorbonne-universite.fr/hal-04460667
https://hal.sorbonne-universite.fr/hal-04460667v1/document
https://hal.sorbonne-universite.fr/hal-04460667v1/file/Atalaia_et_al-2024-Orphanet_Journal_of_Rare_Diseases.pdf
https://doi.org/10.1186/s13023-024-03059-3

المؤلفون: Malina, Jekaterina, Huessler, Eva-Maria, Jöckel, Karl-Heinz, Boog-Whiteside, Eva, Jeschonneck, Nicole, Schröder, Bernadette, Schüle, Rebecca, Kühl, Tobias, Klebe, Stephan

المصدر: Orphanet journal of rare diseases 19(1), 2 (2024). doi:10.1186/s13023-023-03012-w

مصطلحات موضوعية: info:eu-repo/classification/ddc/610, Humans, Quality of Life, Reproducibility of Results, Activities of Daily Living, Neurodegenerative Diseases, Spastic Paraplegia, Hereditary, Surveys and Questionnaires, Patient Reported Outcome Measures, Psychometrics, Health-related quality of life, Hereditary spastic paraplegia, Patient-centered outcome measure

جغرافية الموضوع: DE

Relation: info:eu-repo/semantics/altIdentifier/pmid/pmid:38167479; info:eu-repo/semantics/altIdentifier/issn/1750-1172; https://pub.dzne.de/record/266766; https://pub.dzne.de/search?p=id:%22DZNE-2024-00029%22

الاتاحة: https://pub.dzne.de/record/266766
https://pub.dzne.de/search?p=id:%22DZNE-2024-00029%22

المؤلفون: Lea Bombač Tavčar, Hana Hrobat, Lea Gornik, Irena Preložnik Zupan, Marijana Vidmar Šimic, Polona Pečlin, Gorazd Kavšek, Miha Lučovnik

المصدر: Journal of Clinical Medicine, Vol 13, Iss 3, p 758 (2024)

مصطلحات موضوعية: postpartum anemia, fatigue, intravenous iron treatment, oral iron replacement, patient-centered outcome, Medicine

Relation: https://www.mdpi.com/2077-0383/13/3/758; https://doaj.org/toc/2077-0383; https://doaj.org/article/b0a9df78a1074acd803ee2b00941e218

الاتاحة: https://doi.org/10.3390/jcm13030758
https://doaj.org/article/b0a9df78a1074acd803ee2b00941e218

المؤلفون: Jasmine Wong, Gary Shun Pan Cheung, Angeline Hui Cheng Lee, Colman McGrath, Prasanna Neelakantan

المصدر: International Dental Journal, Vol 73, Iss 1, Pp 28-41 (2023)

مصطلحات موضوعية: Minimal important difference, Oral health–related quality of life, Patient-centered outcome, Root canal treatment, Surgical endodontics, Dentistry, RK1-715

وصف الملف: electronic resource

Relation: http://www.sciencedirect.com/science/article/pii/S0020653922001277; https://doaj.org/toc/0020-6539

URL الوصول: https://doaj.org/article/97961489cbf941869fead04efe5542d4

المؤلفون: Louise Barrett, Emma Elliott, Maarten Voorhaar, Anders Ingelgård, Ingolf Griebsch, Brendon Wong, Jessica Mills, Phoebe Heinrich, Stefan Cano

المصدر: Oncology and Therapy, Vol 11, Iss 1, Pp 129-143 (2023)

مصطلحات موضوعية: EORTC, Fatigue, Mixed-methods research, Oncology, Pain, Patient-centered outcome measurement, Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282

وصف الملف: electronic resource

Relation: https://doaj.org/toc/2366-1070; https://doaj.org/toc/2366-1089

URL الوصول: https://doaj.org/article/5114f39941b944fc99aa64875e2fb15b

المؤلفون: Lisa Bailey-Davis, Amy M. Moore, Melissa N. Poulsen, David A. Dzewaltowski, Stacey Cummings, Laina R. DeCriscio, Jennifer Franceschelli Hosterman, Daniel Huston, H. Lester Kirchner, Shawnee Lutcher, Carolyn McCabe, Gregory J. Welk, Jennifer S. Savage

المصدر: BMC Public Health, Vol 22, Iss 1, Pp 1-13 (2022)

مصطلحات موضوعية: Preschool-age, Rural, low-income, Obesity, Primary care, Patient centered outcome, Public aspects of medicine, RA1-1270

وصف الملف: electronic resource

Relation: https://doaj.org/toc/1471-2458

URL الوصول: https://doaj.org/article/8f079a691c9842bcb99a147f3dcdcecb

المؤلفون: Asma Ashari, Nik Mukhriz Nik Mustapha, Jonathan Jun Xian Yuen, Zhi Kuan Saw, May Nak Lau, Lew Xian, Alizae Marny Fadzlin Syed Mohamed, Rohaya Megat Abdul Wahab, Chiew Kit Yeoh, Malathi Deva Tata, Sindhu Sinnasamy

المصدر: Progress in Orthodontics, Vol 23, Iss 1, Pp 1-11 (2022)

مصطلحات موضوعية: Orthodontic retainers, Dentoalveolar expansion, Relapse, Treatment outcome, Patient-centered outcome, Controlled clinical trial, Dentistry, RK1-715

وصف الملف: electronic resource

Relation: https://doaj.org/toc/2196-1042

URL الوصول: https://doaj.org/article/2da98c5670fb4ebca06e68bf7281babc

المؤلفون: Hur, Inkyong, Lee, Yong Kyu, Kalantar-Zadeh, Kamyar, Obi, Yoshitsugu

المصدر: Cardiorenal Medicine. 9(2)

مصطلحات موضوعية: Kidney Disease, Assistive Technology, Bioengineering, Renal and urogenital, Good Health and Well Being, Biomarkers, Glomerular Filtration Rate, Humans, Kidney, Kidney Failure, Chronic, Nephrology, Precision Medicine, Quality of Life, Renal Dialysis, Urea, Hemodialysis, Residual kidney function, Precision medicine, Incremental hemodialysis, Twice-weekly hemodialysis, Patient-centered outcome, Individualized treatment

وصف الملف: application/pdf

URL الوصول: https://escholarship.org/uc/item/2qt9378j

المؤلفون: Marco Fiore, Andrea Cortegiani, Giansaverio Friolo, Francesca Frigieri Covani, Luigi Cardia, Fausto Ferraro, Daniela Alampi

المساهمون: Fiore, Marco, Cortegiani, Andrea, Friolo, Giansaverio, Frigieri Covani, Francesca, Cardia, Luigi, Ferraro, Fausto, Alampi, Daniela

مصطلحات موضوعية: animal-assisted intervention, animal-assisted activitie, pet therapy, animal-assisted therapy, critically ill patient, intensive care, patient-centered outcome, systematic review

Relation: volume:3; firstpage:1; lastpage:6; numberofpages:6; journal:JOURNAL OF ANESTHESIA, ANALGESIA AND CRITICAL CARE; https://hdl.handle.net/11573/1682658

الاتاحة: https://hdl.handle.net/11573/1682658
https://doi.org/10.1186/s44158-023-00100-y

المؤلفون: Qin, Danchen, Hua, Fang, John, Mike t.

المصدر: Qin , D , Hua , F & John , M T 2023 , ' Glossary for dental patient-centered outcomes ' , Journal of Evidence-Based Dental Practice . https://doi.org/10.1016/j.jebdp.2023.101951

مصطلحات موضوعية: Dental patient-centered outcome, Dental patient-reported outcome, Dental patient-reported outcome measure, Health care quality, Oral health-related quality of life

Relation: https://research.manchester.ac.uk/en/publications/965a9a44-12cb-45f8-a766-f97bd8ba1a4e

الاتاحة: https://research.manchester.ac.uk/en/publications/965a9a44-12cb-45f8-a766-f97bd8ba1a4e
https://doi.org/10.1016/j.jebdp.2023.101951

المؤلفون: Xiaohan Yan, Yuqi Qiao, Jinglu Tong, Ren Mao, Jie Liang, Cuicui Lv, Yueying Chen, Yiyan Wang, Jun Shen, the Young Investigators for the study of Inflammatory Bowel Diseases (YIIBD)

المصدر: Health and Quality of Life Outcomes, Vol 18, Iss 1, Pp 1-11 (2020)

مصطلحات موضوعية: Patient-centered outcome (PRO), Inflammatory bowel disease (IBD), Quality of care (QoC), Computer applications to medicine. Medical informatics, R858-859.7

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s12955-020-01489-8; https://doaj.org/toc/1477-7525

URL الوصول: https://doaj.org/article/4340caade4ae4ad2b750511f156a98f4

المؤلفون: BUZZ Project Team

المساهمون: MS Verloskunde, Child Health, Circulatory Health

مصطلحات موضوعية: integrated care, patient-centered outcome measures, patient-reported experiences, patient-reported outcomes, perinatal care, personalized care, shared decision-making, value-based health care, Health Informatics

وصف الملف: application/pdf

Relation: https://dspace.library.uu.nl/handle/1874/446719

الاتاحة: https://dspace.library.uu.nl/handle/1874/446719

المؤلفون: Chu, Haitao, Lin, Lifeng, Wang, Zheng, Wang, Zilin, Chen, Yong, Cappelleri, Joseph C

المصدر: Wiley Interdiscip Rev Comput Stat ; ISSN:1939-5108 ; Volume:16 ; Issue:1

مصطلحات موضوعية: Bayesian hierarchical model, arm-based, binary outcome, contrast-based, network meta-analysis, patient-centered outcome research

Relation: https://doi.org/10.1002/wics.1639; https://pubmed.ncbi.nlm.nih.gov/38818353; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11134325/

الاتاحة: https://doi.org/10.1002/wics.1639
https://pubmed.ncbi.nlm.nih.gov/38818353
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11134325/

المؤلفون: Basunbul, Ghadeer I

المصدر: Oral Health Prev Dent ; ISSN:1757-9996 ; Volume:22

مصطلحات موضوعية: dental implant, patient satisfaction, patient-centered outcome, photo-disinfection, quality of life, removable denture

Relation: https://doi.org/10.3290/j.ohpd.b4997023; https://pubmed.ncbi.nlm.nih.gov/38376434; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11619867/

الاتاحة: https://doi.org/10.3290/j.ohpd.b4997023
https://pubmed.ncbi.nlm.nih.gov/38376434
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11619867/

المؤلفون: De Giorgis Valentina, Pasca Ludovica, Aznar‐Lain Gemma, Bibic Irena, Bibic Vedrana, Darra Francesca, Dianin Alice, Dressler Anastasia, Jonsson Henna, Komulainen‐Ebrahim Jonna, Kverneland Magnhild, Molteberg Ellen, Ragona Francesca, de Saint‐Martin Anne, Varesio Costanza, Cross, J. Helen

المساهمون: DE GIORGIS, Valentina, Pasca, Ludovica, Aznar‐lain, Gemma, Bibic, Irena, Bibic, Vedrana, Darra, Francesca, Dianin, Alice, Dressler, Anastasia, Jonsson, Henna, Komulainen‐ebrahim, Jonna, Kverneland, Magnhild, Molteberg, Ellen, Ragona, Francesca, de Saint‐Martin, Anne, Varesio, Costanza, Cross, J., Helen

مصطلحات موضوعية: ERN‐EpiCARE, epilepsy, ketogenic dietary therapie, patient centered outcome, unmet needs

Relation: info:eu-repo/semantics/altIdentifier/pmid/38952082; info:eu-repo/semantics/altIdentifier/wos/WOS:001260254900001; volume:9; issue:4; firstpage:1582; lastpage:1588; numberofpages:7; journal:EPILEPSIA OPEN; https://hdl.handle.net/11571/1512099

الاتاحة: https://hdl.handle.net/11571/1512099
https://doi.org/10.1002/epi4.12968

المؤلفون: Kromer, TO, Saner, J, Sieben, JM, Bastiaenen, CHG

المصدر: ISSN:2471-0377 ; Physical Medicine and Rehabilitation - International.

مصطلحات موضوعية: Patient-centered outcome, Low back pain, Validity, Subacromial pain syndrome, info:eu-repo/classification/ddc/617.5

وصف الملف: application/pdf

Relation: https://doi.org/10.21256/zhaw-23468; https://www.austinpublishinggroup.com/physical-medicine/fulltext/pmr-v8-id1181.pdf; https://digitalcollection.zhaw.ch/handle/11475/23468

الاتاحة: https://doi.org/10.21256/zhaw-23468
https://www.austinpublishinggroup.com/physical-medicine/fulltext/pmr-v8-id1181.pdf
https://digitalcollection.zhaw.ch/handle/11475/23468

المؤلفون: Pyatak, Elizabeth Ann, Hernandez, Raymond, Pham, Loree T, Mehdiyeva, Khatira, Schneider, Stefan, Peters, Anne, Ruelas, Valerie, Crandall, Jill, Lee, Pey-Jiuan, Jin, Haomiao, Hoogendoorn, Claire J, Crespo-Ramos, Gladys, Mendez-Rodriguez, Heidy, Harmel, Mark, Walker, Martha, Serafin-Dokhan, Sara, Gonzalez, Jeffrey S, Spruijt-Metz, Donna

مصطلحات موضوعية: ecological momentary assessments, type 1 diabetes (T1D), patient-centered outcomes research, actigraphy, ambulatory monitoring, continuous glucose monitoring, EMA, diabetes, patient-centered outcome, outcome, monitoring, function, emotion, longitudinal, well-being

وصف الملف: application/pdf

Relation: JMIR Research Protocols;10(10); Pyatak, E. A., Hernandez, R., Pham, L. T., Mehdiyeva, K., Schneider, S., Peters, A., Ruelas, V., Crandall, J., Lee, P.-J., Jin, H., Hoogendoorn, C. J., Crespo-Ramos, G., Mendez-Rodriguez, H., Harmel, M., Walker, M., Serafin-Dokhan, S., Gonzalez, J. S., & Spruijt-Metz, D. (2021).Function and emotion in everyday life with type 1 diabetes (feelt1d): Protocol for a fully remote intensive longitudinal study. JMIR Research Protocols, 10(10), e30901. https://doi.org/10.2196/30901; nternational Registered Report Identifier (IRRID): DERR1-10.2196/30901; https://www.researchprotocols.org/2021/10/e30901; https://hdl.handle.net/20.500.12202/9365; https://doi.org/10.2196/30901

الاتاحة: https://hdl.handle.net/20.500.12202/9365
https://www.researchprotocols.org/2021/10/e30901
https://doi.org/10.2196/30901