Learning video Rare Disease Analyser
Published by EBStatMax team
Patient DataClinical Trial DesignResearch and Drug DevelopmentPatient Data
Rare Disease Analyser GitHub repository
Published by Konstantin Emil Thiel (EBStatMax)
Research and Drug DevelopmentClinical Trial DesignPatient DataSource code of the Rare Disease Analyser, the webapp that implements statistical methods for rare diseases
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User Manual for the Rare Disease Analyser
Published by EBStatMax team
Research and Drug DevelopmentClinical Trial DesignPatient Data
EMA Initiative for Patient Registries
Published by IRDiRC
Regulatory AffairsScientific AdvicePatient RegistryEarly Access SupportPatient DataPatient registries are organised systems that use observational methods to collect uniform data on a population defined by a particular disease, condition, or exposure, and that is followed over time. Patient registries can play an important role in monitoring the Safety of medicines
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Natural History Studies (NHS)
Published by IRDiRC
Research and Drug DevelopmentPatient DataNatural HistoryA Natural History is the understanding of a disease progression throughout the lifespan of a patient. The collection of data from a significant number of patients affected by diverse phenotypes inside the same condition contribute to describe the history of a disease. It is a major issue in Rare Diseases research.
View this resource Bookmark this resourceDecentralized trials aim to improve patient access to trials by enabling patient follow-up from home or community care, increase the participation of more diverse populations, and enhancing data collection by combining the adoption of digital endpoints and telemedicine as applied to trials, decentralized trials aim
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