المؤلفون: Carla Gaggiano, Abdurrahman Tufan, Silvana Guerriero, Gaafar Ragab, Jurgen Sota, Stefano Gentileschi, Stefania Costi, Ibrahim A. Almaghlouth, Andrea Hinojosa-Azaola, Samar Tharwat, Petros P. Sfikakis, Giuseppe Lopalco, Matteo Piga, Giovanni Conti, George Fragoulis, Angela Mauro, Ezgi D. Batu, Seza Ozen, Maria Tarsia, Francesco La Torre, Perla A. Kawakami-Campos, Antonio Vitale, Valeria Caggiano, Riza C. Kardaş, Gian Marco Tosi, Bruno Frediani, Tadej Avčin, José Hernández-Rodríguez, Luca Cantarini, Claudia Fabiani, the AIDA Network

المصدر: Ophthalmology and Therapy, Vol 13, Iss 6, Pp 1479-1498 (2024)

مصطلحات موضوعية: Autoinflammatory diseases, Behçet’s disease, Paediatric ophthalmology, Rare disease registries, Retinal vasculitis, Uveitis, Ophthalmology, RE1-994

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/2193-8245Test; https://doaj.org/toc/2193-6528Test

الوصول الحر: https://doaj.org/article/67749e8fdaa44817aea9eccb95aa939dTest

المؤلفون: Zahra Azadmanjir, Mohsen Sadeghi-Naini, Mohammad Dashtkoohi, Maziar Moradi-Lakeh, Jalil Arabkheradmand, James S. Harrop, Vafa Rahimi-Movaghar

المصدر: Informatics in Medicine Unlocked, Vol 47, Iss , Pp 101489- (2024)

مصطلحات موضوعية: Indicators and reagents, Quality of health care, Spinal cord injuries, Disease registries, Dashboard, Computer applications to medicine. Medical informatics, R858-859.7

وصف الملف: electronic resource

العلاقة: http://www.sciencedirect.com/science/article/pii/S2352914824000455Test; https://doaj.org/toc/2352-9148Test

الوصول الحر: https://doaj.org/article/4de6d2781c8e4b4297b4584cda038f78Test

المؤلفون: Luca Stingeni, Andrea Chiricozzi, Piergiacomo Calzavara‐Pinton, Maddalena Napolitano, Ketty Peris, Donatella Schena

المساهمون: Stingeni, Luca, Chiricozzi, Andrea, Calzavara‐pinton, Piergiacomo, Napolitano, Maddalena, Peris, Ketty, Schena, Donatella

مصطلحات موضوعية: Atopic dermatitis is a chronic inflammatory disease characterized by acquired and innate immune dysregulation, impairment of the epithelial barrier function, and microbial dysbiosis. Disease registries play an important role in collecting and storing standardized information finalized to scientific, clinical, or policy purposes in public health and medicine. AtopyReg® is the Italian registry for moderate-to-severe atopic dermatitis in adults promoted by the Italian Society of Dermatology and Venereology (SIDeMaST) aimed to obtain prospective and longitudinal real-world, epidemiologic, and therapeutic data. We analyzed real-world data gathered from AtopyReg ®concerning baseline patients’ demographics and clinical and drug history, confirming the high burden of atopic dermatitis with a significant impact on patients’ quality of life

العلاقة: firstpage:149; lastpage:160; numberofpages:12; journal:AMERICAN JOURNAL OF CLINICAL DERMATOLOGY; https://hdl.handle.net/11562/1117568Test

الإتاحة: https://doi.org/10.1007/s40257-023-00819-yTest
https://hdl.handle.net/11562/1117568Test

المؤلفون: Azadmanjir, Zahra, Sadeghi-Naini, Mohsen, Dashtkoohi, Mohammad, Moradi-Lakeh, Maziar, Arabkheradmand, Jalil, Harrop, James, Rahimi-Movaghar, Vafa

المصدر: Department of Neurosurgery Faculty Papers

مصطلحات موضوعية: indicators and reagents, quality of health care, spinal cord injuries, disease registries, dashboard, Biomedical Informatics, Health Information Technology, Medicine and Health Sciences, Neurology, Surgery

وصف الملف: application/pdf

العلاقة: https://jdc.jefferson.edu/neurosurgeryfp/226Test; https://jdc.jefferson.edu/context/neurosurgeryfp/article/1230/viewcontent/The_design_of_a_quality_improvement_dashboard_for_monitoring_spinal_cord_and_column_injuries.pdfTest

الإتاحة: https://jdc.jefferson.edu/neurosurgeryfp/226Test
https://jdc.jefferson.edu/context/neurosurgeryfp/article/1230/viewcontent/The_design_of_a_quality_improvement_dashboard_for_monitoring_spinal_cord_and_column_injuries.pdfTest

المؤلفون: Munung, Nchangwi Syntia, Nembaware, Victoria, Osei-Tutu, Lawrence, Treadwell, Marsha, Chide, Okocha Emmanuel, Bukini, Daima, Tutuba, Hilda, Wonkam, Ambroise

المصدر: BMC Medical Ethics. 23(1)

مصطلحات موضوعية: Philosophy and Religious Studies, Health Sciences, Public Health, Applied Ethics, Pediatric, Pediatric Research Initiative, Good Health and Well Being, Child, Humans, Adolescent, Adult, Parental Consent, Botswana, Nigeria, South Africa, Cameroon, Assent, Parental consent, Reconsent, Disease registries, Minors, SickleInAfrica ELSI WG, Public health, Applied ethics

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/84j299wkTest

المؤلفون: Olarte Parra, Camila, Waernbaum, Ingeborg, 1972, Schön, Staffan, Goetghebeur, Els

المصدر: Statistics in Medicine. 41(21):4176-4199

مصطلحات موضوعية: causal inference, disease registries, kidney transplantation, observational study, survival analysis, target trial emulation

وصف الملف: electronic

الوصول الحر: https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-481415Test
https://doi.org/10.1002/sim.9503Test
https://uu.diva-portal.org/smash/get/diva2:1686394/FULLTEXT01.pdfTest

المؤلفون: Nchangwi Syntia Munung, Victoria Nembaware, Lawrence Osei-Tutu, Marsha Treadwell, Okocha Emmanuel Chide, Daima Bukini, Hilda Tutuba, SickleInAfrica ELSI WG, Ambroise Wonkam

المصدر: BMC Medical Ethics, Vol 23, Iss 1, Pp 1-10 (2022)

مصطلحات موضوعية: Assent, Parental consent, Reconsent, Disease registries, Minors, Medical philosophy. Medical ethics, R723-726

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1472-6939Test

الوصول الحر: https://doaj.org/article/860302283f764fe59c60cf93cba63ddcTest

المؤلفون: Margaret C. Miller, Rana Bayakly, Bernard G. Schreurs, Kimberly J. Flicker, Swann Arp Adams, Lucy A. Ingram, James W. Hardin, Matthew Lohman, Marvella E. Ford, Quentin McCollum, Audrey McCrary-Quarles, Oluwole Ariyo, Sue E. Levkoff, Daniela B. Friedman

المصدر: Frontiers in Aging, Vol 4 (2023)

مصطلحات موضوعية: public health, aging, cancer, disease surveillance, disease registries, Alzheimer’s disease and related dementias, Geriatrics, RC952-954.6

وصف الملف: electronic resource

العلاقة: https://www.frontiersin.org/articles/10.3389/fragi.2023.1179275/fullTest; https://doaj.org/toc/2673-6217Test

الوصول الحر: https://doaj.org/article/1693b9e5ad364cc9a54b0b12e1c87653Test

المؤلفون: Wong, Wendy M, Tham, Yih Chung, Simunovic, Matthew P, Chen, Fred Kuanfu, Luu, Chi D, Chen, Haoyu, Jin, Zi-Bing, Shen, Ren-Juan, Li, Shiying, Sui, Ruifang, Zhao, Chen, Yang, Liping, Bhende, Muna, Raman, Rajiv, Sen, Parveen, Ghosh, Arkasubhra, Poornachandra, B, Sasongko, Muhammad Bayu, Arianti, Alia, Chia, Valen, Mangunsong, Cosmos O, Manurung, Florence, Fujinami, Kaoru, Ikeda, Hanako, Woo, Se Joon, Kim, Sang Jin, Mohd Khialdin, Safinaz, Othman, Othmaliza, Bastion, Mae-Lynn Catherine, Kamalden, Ain Tengku, Lott, Pooi Wah Penny, Fong, Kenneth, Shunmugam, Manoharan, Lim, Amelia, Thapa, Raba, Pradhan, Eli, Rajkarnikar, Sthapit Purnima, Adhikari, Srijana, Ibañez, B Manuel Benjamin Iv, Koh, Adrian, Chan, Choi Mun M, Fenner, Beau J, Tan, Tien-En, Laude, Augustinus, Ngo, Wei Kiong, Holder, Graham E, Su, Xinyi, Chen, Ta-Ching, Wang, Nan-Kai, Kang, Eugene Yu-Chuan, Huang, Chu-Hsuan, Surawatsatien, Nuntachai, Pisuchpen, Phattrawan, Sujirakul, Tharikarn, Kumaramanickavel, Govindasamy, Singh, Mandeep, Leroy, Bart, Michaelides, Michel, Cheng, Ching-Yu, Chen, Li Jia, Chan, Hwei Wuen

المصدر: Asia-Pacific Journal of Ophthalmology , Article 100030. (2023) (In press).

مصطلحات موضوعية: Asia-Pacific, Deep Phenotyping, Disease Registries, Inherited Retinal Diseases, Ophthalmic Genetics

وصف الملف: text

العلاقة: https://discovery.ucl.ac.uk/id/eprint/10186155/1/1-s2.0-S2162098923000300-main.pdfTest; https://discovery.ucl.ac.uk/id/eprint/10186155Test/

الإتاحة: https://discovery.ucl.ac.uk/id/eprint/10186155/1/1-s2.0-S2162098923000300-main.pdfTest
https://discovery.ucl.ac.uk/id/eprint/10186155Test/

المؤلفون: Muhammad Kassim Javaid, Marina Mordenti, Manila Boarini, Luca Sangiorgi, ERN BOND Working Group, Ingunn Westerheim, Inês Alves, Rebecca Tvedt Skarberg, Natasha M. Appelman-Dijkstra, Corinna Grasemann

المصدر: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-9 (2021)

مصطلحات موضوعية: Rare bone and mineral conditions, Rare disease registries, Osteogenesis imperfecta, Survey, Natural History, Medicine

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/164bf1ebabe745438f86281f9fc1a1cdTest