RECONNECT Fragile X syndrome clinical trial open throughout 2024

February 28th, 2024

Children aged 3 to 22 years who are experiencing Fragile X syndrome-associated behavioural issues may be eligible to participate in a clinical trial in Australia.

The RECONNECT study is seeking to evaluate the efficacy of a topical gel developed by Zynerba Pharmaceuticals in helping with the Fragile X-associated behaviours.

The study remains open to participants through to the end of 2024. 

The study is being conducted at a number of sites in countries including the United Kingdom, the United States and Australia. The Australian study sites are:

Adelaide
Flinders University, Health Data and Clinical Trials
Flinders Medical Centre
Bedford Park SA 5042
Phone +0468 566 663
Study Contact: Rupali Saikia rupali.saikia@flinders.edu.au

Brisbane
Queensland Children’s Hospital
62 Graham St
South Brisbane QLD 4101
Phone +61 7 3069 7457
Study Contact: Ellen Taylor Ellen.Taylor@health.qld.gov.au

Melbourne
Genetic Clinics Australia
263 Glen Eira Rd
Caulfield North VIC 3161
Phone +61 3 9528 1910
Study Contact: Melanie van Buuren travel@travelclinic.com.au

Sydney
The Children’s Hospital at Westmead
Cnr Hawkesbury Rd & Hainsworth St
Westmead NSW 2145
Phone +61 2 9845 0336
Study Contact: Joanne Booth Joanne.Booth@health.nsw.gov.au

Where participants live elsewhere in Australia,  Zynerba Pharmaceuticals  may reimburse some cost of travel.

To learn more:    fragilexhelp.com.au

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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