Results 21 to 30 of about 240,622 (166)

Rare lysosomal disease registries: lessons learned over three decades of real-world evidence

Orphanet Journal of Rare Diseases, 2022
Lysosomal storage disorders (LSD) are rare diseases, caused by inherited deficiencies of lysosomal enzymes/transporters, that affect 1 in 7000 to 1 in 8000 newborns.
P. K. Mistry, P. Kishnani, C. Wanner, D. Dong, J. Bender, J. L. Batista, J. Foster   +6 more
doaj   +1 more source

Nine best practices for research software registries and repositories

, 2022
International audienceScientific software registries and repositories improve software findability and research transparency, provide information for software citations, and foster preservation of computational methods in a wide range of disciplines ...
Hwang, Lorraine, Registries, Task Force On Best Practices For Software, Allen, Alice, Consortium, Scicodes, Ménager, Hervé, Morrell, Thomas, Garijo, Daniel, Hucka, Michael   +7 more
core   +1 more source

Impact of lymphadenectomy on the treatment of endometrial cancer using data from the JSOG cancer registry [PDF]

Obstetrics & Gynecology Science, 2021
Objective Regional lymph node (LN) dissection is a standard surgical procedure for endometrial cancer, but there is currently no clear consensus on its therapeutic significance. We aimed to determine the impact of regional LN dissection on the outcome of
Keiko Saotome, Wataru Yamagami, Hiroko Machida, Yasuhiko Ebina, Yoichi Kobayashi, Tsutomu Tabata, Masanori Kaneuchi, Satoru Nagase, Takayuki Enomoto, Daisuke Aoki, Mikio Mikami   +10 more
doaj   +1 more source

Nine Best Practices for Research Software Registries and Repositories: A Concise Guide [PDF]

, 2020
Scientific software registries and repositories serve various roles in their respective disciplines. These resources improve software discoverability and research transparency, provide information for software citations, and foster preservation of ...
Best Practices for Software Registries, Task Force on, Chue Hong, Neil P; id_orcid   +1 more
core   +1 more source

International cooperation needed to improve national anterior cruciate ligament registries

, 2022
Purpose: The aim of this study is to illustrate an overview of the registries currently operative in many countries to support the introduction of new prospective registries in other countries.
Randelli P., Moatshe G., Pieroni A., Compagnoni R., Grassi A., Zaffagnini S., Familiari F., Bait C.   +7 more
core   +2 more sources

Using ecological socioeconomic position (SEP) measures to deal with sample bias introduced by incomplete individual-level measures: inequalities in breast cancer stage at diagnosis as an example

BMC Public Health, 2019
Background When studying the influence of socioeconomic position (SEP) on health from data where individual-level SEP measures may be missing, ecological measures of SEP may prove helpful.
Sébastien Lamy, Florence Molinié, Laetitia Daubisse-Marliac, Anne Cowppli-Bony, Stéphanie Ayrault-Piault, Evelyne Fournier, Anne-Sophie Woronoff, Cyrille Delpierre, Pascale Grosclaude   +8 more
doaj   +1 more source

Preliminary report of Iranian Registry of Alzheimer's disease in Tehran province: A cross‐sectional study in Iran

Health Science Reports, 2022
Background and Aims Alzheimer's disease (AD) is the main cause of dementia and over the 55 million people live with dementia worldwide. We aimed to establish the first database called the Iranian Alzheimer's Disease Registry to create a powerful source ...
Javad Fahanik‐Babaei, Mohsen Sedighi, Soraya Mehrabi, Omid Pournik, Abbas Sheikh Taheri, Leila Kamalzadeh, Mahsa Zarei, Mehrdad Roghani, Fereshteh Golab, Mostafa Almasi, Afshin Etezadi, Siamak Afshin‐Majd, Seyed Kazem Malakouti, Majid Rajabi, Mehdi Moghaddasi, Gholamreza Hajati, Fatemeh Golmohammadi Khamne, Arzhang Jafari, Alireza Amanollahi, Tourandokht Baluchnejadmojarad   +19 more
doaj   +1 more source

CLARIN Concept Registry: The New Semantic Registry.

, 2015
The CLARIN Concept Registry (clarin.eu/conceptregistry) is the place in the CLARIN Infrastructure where common and shared semantics of, but not limited to, linguistic concepts are defined. This is important to achieve semantic interoperability, and to overcome to a degree the diversity in data structures, either in metadata or linguistic resources ...
Schuurman, Ineke, Windhouwer, Menzo, Ohren, Oddrun, Daniel, Zeman   +3 more
openaire   +5 more sources

What Happened to the Participants of the Math Olympiad 1971? A Multiple-Case Study Concerning the Occupational Success of the Winning Team from Hungary, Math Olympiad–Occupational Success

Journal of Intelligence, 2019
The aim of this multiple-case study was to find out how the most successful team of the 1971 Mathematical Olympiad in Hungary developed professionally.
Benedikt Gasser
doaj   +1 more source

CPAnet Registry—An International Chronic Pulmonary Aspergillosis Registry [PDF]

Journal of Fungi, 2020
Chronic pulmonary aspergillosis (CPA) is a chronic fungal infection of the lung associated with high morbidity and mortality. The CPA Research network (CPAnet) registry established in 2018 is an international multicenter collaboration aiming to improve CPA knowledge and patient care.
Christian B. Laursen, Jesper Rømhild Davidsen, Lander Van Acker, Helmut J.F. Salzer, Danila Seidel, Oliver A. Cornely, Martin Hoenigl, Ana Alastruey-Izquierdo, Christophe Hennequin, Cendrine Godet, Aleksandra Barac, Holger Flick, Oxana Munteanu, Eva Van Braeckel   +13 more
openaire   +6 more sources