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Center for Global Research Data

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About CureDuchenne is recognized as the global leader in research, patient care and innovation for improving and extending the lives of children with Duchenne.
Will individual participant data be available (including data dictionaries)? Yes
What data in particular will be shared? All of the individual participant data collected, after deidentification, for placebo subjects from the phase 2 and 3 randomized, double-blind, placebo-controlled clinical trials of drisapersen for the treatment of Duchenne muscular dystrophy (DMD) as well as observational studies.
Exceptions Data sets will not be shared if sharing the data is for commercial interests.
What documents will be available? Study data, in a format similar to SDTM

Protocols with all amendments

Annotated case report forms

Dataset specifications (“define” files)

For what types of analyses? Investigation of placebo response and the outcomes of comparator (placebo) subjects in DMD clinical trials
By what mechanism will the data be made available? Using the Vivli Platform via secure download