Zobrazeno 1 - 10
of 259
pro vyhledávání: '"disease registries"'
Autor:
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
Publikováno v:
Ophthalmology and Therapy, Vol 13, Iss 6, Pp 1479-1498 (2024)
Abstract Introduction This study aims to characterize ocular manifestations of juvenile Behçet’s disease (jBD). Methods This was a registry-based observational prospective study. All subjects with jBD from the Autoinflammatory Diseases Alliance (A
Externí odkaz:
https://doaj.org/article/67749e8fdaa44817aea9eccb95aa939d
Autor:
Zahra Azadmanjir, Mohsen Sadeghi-Naini, Mohammad Dashtkoohi, Maziar Moradi-Lakeh, Jalil Arabkheradmand, James S. Harrop, Vafa Rahimi-Movaghar
Publikováno v:
Informatics in Medicine Unlocked, Vol 47, Iss , Pp 101489- (2024)
Background: Interactive dashboards are a powerful tool for dynamic visualization and monitoring of patient performance and serve as a useful to for optimal decision-making. The National Spinal Column and Cord Injury Registry of Iran (NSCIR-IR) was de
Externí odkaz:
https://doaj.org/article/4de6d2781c8e4b4297b4584cda038f78
Autor:
Nchangwi Syntia Munung, Victoria Nembaware, Lawrence Osei-Tutu, Marsha Treadwell, Okocha Emmanuel Chide, Daima Bukini, Hilda Tutuba, SickleInAfrica ELSI WG, Ambroise Wonkam
Publikováno v:
BMC Medical Ethics, Vol 23, Iss 1, Pp 1-10 (2022)
Abstract The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age grou
Externí odkaz:
https://doaj.org/article/860302283f764fe59c60cf93cba63ddc
Akademický článek
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Autor:
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
Publikováno v:
Frontiers in Aging, Vol 4 (2023)
Like cancer, Alzheimer’s disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is incr
Externí odkaz:
https://doaj.org/article/1693b9e5ad364cc9a54b0b12e1c87653
Akademický článek
Tento výsledek nelze pro nepřihlášené uživatele zobrazit.
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Autor:
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
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-9 (2021)
Abstract Background Understanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics and therapeutics. Recruitment and long-term participation in registries are
Externí odkaz:
https://doaj.org/article/164bf1ebabe745438f86281f9fc1a1cd
Autor:
Ingridy Barbalho, Ricardo Valentim, Mário Dourado Júnior, Daniele Barros, Hércules Pedrosa Júnior, Felipe Fernandes, César Teixeira, Thaísa Lima, Jailton Paiva, Danilo Nagem
Publikováno v:
BMC Neurology, Vol 21, Iss 1, Pp 1-12 (2021)
Abstract Background This article comprises a systematic review of the literature that aims at researching and analyzing the frequently applied guidelines for structuring national databases of epidemiological surveillance for motor neuron diseases, es
Externí odkaz:
https://doaj.org/article/8a6e97c9ce444465b2ea1f9d5e83dbff
Autor:
Carla E. M. Hollak, Sandra Sirrs, Sibren van den Berg, Vincent van der Wel, Mirjam Langeveld, Hanka Dekker, Robin Lachmann, Saco J. de Visser
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 15, Iss 1, Pp 1-7 (2020)
Abstract Independent disease registries for pre-and post-approval of novel treatments for rare diseases are increasingly important for healthcare professionals, patients, regulators and the pharmaceutical industry. Current registries for rare disease
Externí odkaz:
https://doaj.org/article/afbdd2fe69ca4f0281f87c332c225ba6
Publikováno v:
Frontiers in Aging Neuroscience, Vol 14 (2022)
To help address the increasing challenges related to the provision of dementia care, dementia registries have emerged around the world as important tools to gain insights and a better understanding of the disease process. Dementia registries provide
Externí odkaz:
https://doaj.org/article/bfdeb56041bc48b594c8fb0b0f08cbf3