By Hilary Rosselot

Did you know Zynerba Pharmaceuticals’ RECONNECT trial has a completely at-home/virtual option for participation?  

Families can participate in the RECONNECT trial completely from their home through a combination of at-home and virtual visits! The at-home option was introduced to help lessen potential barriers for families who live far from a Fragile X clinical study site or find it too challenging to go to a site for study visits.  

To date, several families have enrolled in the RECONNECT trial using the at-home/virtual option. Many are not near a trial site and have appreciated the flexibility and convenience of this participation option. Families who have had significant challenges going to a clinic for visits have also been able to enroll. 

At-home and virtual visits are supported by Dr. David Kudrow and his team at Science 37. 

Whether you choose for your child to participate through this new at-home option or at a Fragile X clinical study site, your participation is critical to help complete the RECONNECT trial. RECONNECT is evaluating an investigational medicine in the treatment of behavioral symptoms of Fragile X syndrome. If the data is positive, it may lead to the approval of the first medicine specifically for the treatment of behavioral symptoms in Fragile X syndrome. 

Interested? Learn more about the RECONNECT trial by visiting: https://fragilex.org/opportunities-for-families/reconnect/ 

about
Author Hilary Rosselot

Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!

learn more

Visit the RECONNECT MyFXReserach post for more infromation:

Clinical Trial RECONNECT: ZYN002 Gel | MyFXResearch Portal (fragilex.org)

  • Observable symptoms of anxiety in individuals with Fragile x syndrome.

Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.