Results 21 to 30 of about 1,310,758 (308)

An assessment of the quality of the I-DSD and the I-CAH registries - international registries for rare conditions affecting sex development [PDF]

, 2017
With the proliferation of rare disease registries, there is a need for registries to undergo an assessment of their quality against agreed standards to ensure their long-term sustainability and acceptability.This study was performed to evaluate the I-DSD
Ahmed, S.F., Bryce, J., Jiang, J., Kourime, M., Nixon, R., Rodie, M.   +5 more
core   +1 more source

Age-standardized expected years of life lost: quantification of cancer severity

BMC Public Health, 2019
Background The critical implications of the expected years of life lost (EYLL) index of cancer for health policy assessments have been largely overlooked. We advocate to standardize life lost indices.
Yueh Wang, Chun-Ju Chiang, Wen-Chung Lee
doaj   +1 more source

A pressão coronária (às vezes) mente. . . [PDF]

, 2018
Comment on: Comparative analysis of fractional flow reserve and instantaneous wave-free ratio: Results of a five-year registry. [Rev Port Cardiol.
Baptista, SB, Raposo, L
core   +1 more source

Impact of the National Amyotrophic Lateral Sclerosis Registry: Analysis of Registry‐funded Research

Annals of Clinical and Translational Neurology, 2022
Objective This research aims to examine the impact of the National Amyotrophic Lateral Sclerosis (ALS) Registry‐funded research activities. Methods Registry‐funded research and related publications were identified through the National ALS Registry ...
Lindsay Rechtman, Stephan Brenner, Marcienne Wright, Maggie Ritsick, Farhana Rahman, Moon Han, Jaime Raymond, Theodore Larson, D. Kevin Horton, Paul Mehta   +9 more
doaj   +1 more source

Psoriatic Arthritis Registries

The Journal of Rheumatology Supplement, 2015
The introduction of new biological drugs for the treatment of rheumatoid arthritis and spondyloarthritis has led to the creation of a number of registries in Europe and the United States. Most of them are sponsored by national rheumatology societies, and provide information that is useful in clinical practice concerning the clinical characteristics ...
Sarzi-Puttini, Piercarlo, Varisco, Valentina, Ditto, Maria Chiara, Benucci, Maurizio, Atzeni, Fabiola   +4 more
openaire   +3 more sources

Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR) [PDF]

, 2015
The Belgian Neuromuscular Disease Registry, commissioned in 2008, aims to collect data to improve knowledge on neuromuscular diseases and enhance quality health services for neuromuscular disease patients.
BNMDR Scientific Committee, the, De Bleecker, Jan, Doggen, Kris, Roy, Anna J, Van Casteren, Viviane, Van Coster, Rudy, Van Damme, Philip, Van den Bergh, Peter   +7 more
core   +2 more sources

The microRNA Registry [PDF]

Nucleic Acids Research, 2004
The miRNA Registry provides a service for the assignment of miRNA gene names prior to publication. A comprehensive and searchable database of published miRNA sequences is accessible via a web interface (http://www.sanger.ac.uk/Software/Rfam/mirna/), and all sequence and annotation data are freely available for download.
openaire   +3 more sources

National Rare Diseases Registry System (NRDRS): China’s first nation-wide rare diseases demographic analyses

Orphanet Journal of Rare Diseases, 2021
Background China has made tremendous progresses in serving the needs of its people living with rare diseases in the past decade, especially over the last 5 years.
Jian Guo, Peng Liu, Limeng Chen, Haohan Lv, Jie Li, Weichao Yu, Kaifeng Xu, Yicheng Zhu, Zhihong Wu, Zhuang Tian, Ye Jin, Rachel Yang, Weihong Gu, Shuyang Zhang, the Administrative Group of National Rare Diseases Registry System of China   +14 more
doaj   +1 more source

Scotland Registry for Ankylosing Spondylitis (SIRAS) – Protocol [PDF]

, 2016
Funding SIRAS was funded by unrestricted grants from Pfizer and AbbVie. The project was reviewed by both companies, during the award process, for Scientific merit, to ensure that the design did not compromise patient safety, and to assess the global ...
Dean, Linda E, Gibson, Jane, Hunter, John, Jones, Elizabeth A, Jones, Gareth T, MacDonald, Alan G, Macfarlane, Gary J, Marshall, David, McEntegart, Anne, Munro, Robin, Sturrock, Roger D   +10 more
core   +1 more source

Morbidity and Mortality of Pediatric Spinal Deformity Surgery Using the Japanese Orthopedic Association National Registry/Japanese Society for Spine Surgery and Related Research Database (JOANR/JSSR-DB)

Spine Surgery and Related Research
Introduction: The Japanese Scoliosis Society conducted a survey on the complications of pediatric spinal deformity surgeries in 2012, 2014, and 2017.
Hideyuki Arima, Takumi Takeuchi, Yu Yamato, Tomoyuki Asada, Satoru Demura, Toru Doi, Akira Matsumura, Hiroki Oba, Ryo Sugawara, Satoshi Suzuki, Shinji Takahashi, Haruki Ueda, Kei Watanabe, Naobumi Hosogane   +13 more
doaj   +1 more source