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
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)
Inhibition Deficits Are Modulated by Age and CGG Repeat Length in Carriers of the FMR1 Premutation Allele Who Are Mothers of Children with Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — Older mothers of children with Fragile X syndrome who have mid-range CGG repeats (~80–100) may be at increased risk for difficulties with inhibition.
Language Across the Lifespan in Fragile X Syndrome: Characteristics and Considerations for Assessment
RESEARCH RESULTS ROUNDUP — Describe cognition and language in FXS using the data from a large group, while trying to understand if the standard assessments are feasible (able to be done accurately) and valid (reflect reality) in FXS and then compared the assessment results to caregiver report.