Mr_Cod, I don’t share your view.
Patient recruitment for the parent trial (Lavender) doesn’t commence until Q4. Trial duration is 19 weeks for each patient (3 weeks screening, 12 weeks treatment, 4 weeks follow-up). Eligible patients who consent then commence the 9 month extension trial (Lilac). The first trial participants to commence the open-label extension study will do so prior to other participants completing the parent study and, dependent upon the rate of recruitment, some participants may commence the extension study prior to the last patients being recruited for the parent study.
Hence, confidentiality is very important.
Previously, Acadia has said
With all investigational studies, we instruct investigators, clinical trial participants, and families to maintain confidentiality regarding their experiences.
On the trial-dedicated website, Acadia says
Social Media and Clinical Studies
If your loved one participates in a clinical study it is important that you do not share information with anyone other than people who need to know, like your doctors and the study team at the clinic. Although social media communication programs such as Facebook, Twitter, Instagram, YouTube, Snapchat, etc., are fun and easy to use, it is important that information is not shared this way or any other way, like with other people in the waiting room during study visits. This can impact the outcome of a study and its chances of success.
No-one wants to see the chance of trial success compromised. For that reason, I’m not expecting any feedback from the trial prior to Acadia’s release of results.
https://rettsyndromestudies.com/
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