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Webinar: Returning clinical research results to trial participants

VISION-DMD Webinar: Wednesday 19th August 2020
3pm – 4pm CEST

Children and their families participating in clinical trials have invested tremendous time, energy, and emotions in their participation. If families wish to learn to what treatment their child was assigned in a trial, and how their child did relative to others in the same trial, many agree that they should have access to those data.

While considerable efforts have been made to share global findings and de-identified (anonymous) clinical trial data between companies and foundations, efforts to share a participant’s own identified data with the family have lagged. This lag is due, in part, to a complicated set of decisions and concerns.

One important concern is when a result is ‘ready’ to be returned, meaning whether the result is valid and may have some importance to families and/or clinicians. A second concern is what education and support is needed so that families can interpret and not misunderstand the result.

With these issues in mind, ReveraGen has developed an approach to provide clinical trial data on a child directly to participant families.  Once a participant’s own personal clinical trial data are ‘in hand’ (owned by the family), they can also take step to share these data as they wish. Key to these efforts are clear education of families on interpretation of clinical trial data, and at times, difficulty extending data to the clinical care of the child.

In this webinar, Dr. Peay will address the ethical, legal, and social implications of returning clinical research results to trial participants. Next, Dr. Conklin will discuss ReveraGen’s approach to return of individual patient data to families of participants in the vamorolone studies. After the presentation there will be time for questions from the audience.

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