For all of our families with children and young people with CLN3 (Juvenile Batten disease), we are in regular contact with Abeona Therapeutics and have asked for clarification on whether families from outside of the US can access their forthcoming clinical trial. We have received the following information from them and we have asked to be kept updated on any changes or new information as it becomes available. This also includes information and timing concerning a site for the trial in Europe.
“At this time Abeona Therapeutics are focused on the necessary studies and efforts needed to enable regulatory allowance by the FDA here in the US. With that, we are working with the clinicians at University of Rochester, the selected initial site, to determine the design for the study and the criteria for participation. What we are having those interested in the study do is to place their information into the University of Rochester’s Institutional Review Board approved online contact registry if they are interested.
The University of Rochester Batten Center has more information on them.