The goal of this observational study is to create a single macro registry system with data collection on common clinical features, grouping the different rare diseases (RD). Moreover, the specific goals are to generate an alert system for possible cases of RD with data from the electronic medical record, to describe the occurrence of RD in the evaluated population, to characterize the population, to describe patterns of diagnosis and treatment of RD present at the time, and to explore patient-reported outcomes.
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Overall Survival Rate
Timeframe: From date of enrollment/ diagnosis until the date of death/ last follow up, assessed up to 5 years.
Mortality Rate
Timeframe: From date of enrollment/ diagnosis until the date of death, assessed up to 5 years.
Time to First Treatment
Timeframe: From date of diagnosis until the initiation of first treatment, assessed up to 12 months.
Demographic and Epidemiologic Profile
Timeframe: At baseline, assessed at the time of enrollment.
Clinical Characteristics and Disease Progression
Timeframe: From date of enrollment until the end of the study, assessed up to 5 years.
Treatment Modalities Received
Timeframe: From the initiation of first treatment until the last recorded intervention, assessed up to 5 years.
Treatment Response
Timeframe: From the initiation of treatment until documented disease progression or treatment cessation, assessed up to 5 years.
Maria Lourdes Posadas Martinez, PhD
Incidence of Treatment-Related Adverse Events
Timeframe: From the initiation of treatment until 12 months after the last dose, assessed up to 5 years.