Results 11 to 20 of about 700,979 (308)

Pain in Children and Adolescents with Spinal Muscular Atrophy: A Longitudinal Study from a Patient Registry

open access: yesChildren, 2023
Spinal muscular atrophy (SMA) is a devastating genetic neurodegenerative disease caused by the insufficient production of Survival Motor Neuron (SMN) protein.
Inmaculada Pitarch-Castellano   +8 more
doaj   +1 more source

Bacteriophage Therapy for Difficult-to-Treat Infections: The Implementation of a Multidisciplinary Phage Task Force (The PHAGEFORCE Study Protocol)

open access: yesViruses, 2021
In times where only a few novel antibiotics are to be expected, antimicrobial resistance remains an expanding global health threat. In case of chronic infections caused by therapy-resistant pathogens, physicians have limited therapeutic options, which ...
Jolien Onsea   +17 more
doaj   +1 more source

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases. [PDF]

open access: yes, 2019
Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC).
Beaure d'Augères, Guillaume   +29 more
core   +2 more sources

PATIENTS REGISTRIES WORLDWIDE [PDF]

open access: yesActa Healthmedica, 2017
Abstract Introduction: A disease/patients’ registry, is a collection of secondary data related to those with particular condition/disease/procedure. Patients registries not only provide health providers and patients with reminders to check certain examinations in order to achieve certain quality goals, but their main role is associated to health ...
Hossein Siabani, Soraya Siabani
openaire   +1 more source

Maintaining patient registries, on the basis of which regulatory authorities can make decisions regarding medicines

open access: yesРеальная клиническая практика: данные и доказательства, 2023
The use of data and evidence from real clinical practice (RWD / RWE) is becoming more and more relevant to the healthcare system when making critical decisions in the field of drug circulation regulation, as well as making decisions on the inclusion or ...
A. V. Ivanov, V. N. Semykin
doaj   +1 more source

Implementation of anaphylaxis management guidelines [PDF]

open access: yes, 2012
Anaphylaxis management guidelines recommend the use of intramuscular adrenaline in severe reactions, complemented by antihistamines and corticoids; secondary prevention includes allergen avoidance and provision of self-applicable first aid drugs.
Gough, Hannah   +12 more
core   +1 more source

Novel patient-centered approach to facilitate same-day discharge in patients undergoing elective percutaneous coronary intervention [PDF]

open access: yes, 2018
Background Same‐day discharge ( SDD ) after elective percutaneous coronary intervention is safe, less costly, and preferred by patients, but it is usually performed in low‐risk patients,
Amin, Amit P   +14 more
core   +2 more sources

The utility of including pathology reports in improving the computational identification of patients

open access: yesJournal of Pathology Informatics, 2016
Background: Celiac disease (CD) is a common autoimmune disorder. Efficient identification of patients may improve chronic management of the disease. Prior studies have shown searching International Classification of Diseases-9 (ICD-9) codes alone is ...
Wei Chen   +3 more
doaj   +1 more source

High prevalence of self‐reported autism spectrum disorder in the Propionic Acidemia Registry

open access: yesJIMD Reports, 2020
Propionic Acidemia (PA) is characterized by the accumulation of propionic acid (PPA), its toxic derivatives, and ammonia. The disease causes multiorgan damage, especially in heart, pancreas, and brain; seizures and intellectual disability are often ...
Maria L. Cotrina   +2 more
doaj   +1 more source

Innovation in Informatics to Improve Clinical Care and Drug Accessibility for Rare Diseases in China

open access: yesFrontiers in Pharmacology, 2021
Background: In China, there are severe unmet medical needs of people living with rare diseases. Relatedly, there is a dearth of data to inform rare diseases policy.
Peng Liu   +9 more
doaj   +1 more source

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