The Dup15q Alliance and Angelman Syndrome Foundation Announce Development of the International 15q Clinical Research Network.
By Combining Forces, the Dup15q Alliance and Angelman Syndrome Foundation will Expand Clinics Nationwide to Help More Patients with 15q syndromes.
Thousands of families affected by Dup15q Syndrome and Angelman Syndrome (AS) will soon have greater access to comprehensive clinical care through the development of the 15q Clinical Research Network. The Dup15q Alliance and Angelman Syndrome Foundation are proud to announce that through this collaborative effort, the 15q Clinical Research Network would expand to 20 operating clinics to serve patients with Dup15q or Angelman Syndrome. Dup15q Syndrome and AS are two rare conditions that occur due to a problem with the same region of the 15th chromosome.
- Seattle Children’s Hospital
- UCSF Benioff Children’s Hospital
- UCLA Cart Center for Autism Research and Treatment
- Rady Children’s Hospital San Diego
- Intermountain Primary Children’s Medical Center
- Children’s Hospital Colorado
- Texas Children’s Hospital
- Mayo Clinic
- Minnesota Epilepsy Group
- Rush University Medical Center
- Lurie Children’s Hospital Chicago
- Monroe Carell Jr. Children’s Hospital
- Geisinger Autism & Developmental Medicine Institute
- NYU Langone Medical Center
- Weill Cornell Medical College of New York
- Massachusetts General Hospital
- UNC Carolina Institute for Developmental Disabilities
- Miami Children’s Hospital
- Buenos Aires, Argentina
- Children’s Hospital of Eastern Ontario
- Edmond and Lily Safra
- Children’s Hospital Tel Hashomer
- Erasmus MC Rotterdam
For more than a decade, the Dup15q Alliance and Angelman Syndrome Foundation have been supporting multidisciplinary clinics to ensure up-to-date, evidence-based clinical care for individuals with Dup15q and Angelman syndromes. What began as a few clinics, has grown to almost 20 sites in the U.S. – with four international sites between our two organizations. These clinics are working to standardize care for those with these disorders – a critical step forward as we approach clinical trials. Additionally, they serve as a platform for robust clinical research including collection of integral natural history data.
Vanessa Vogel-Farley, Executive Director of Dup15q Alliance states, “One of the biggest challenges those who have 15q related disorders face is finding clinical support that is educated about their needs and that are effective activated partners in the complex medical care of their loved one. The collaboration between the Angelman and Dup15q syndrome communities in the establishment of the 15q Clinical Research Network helps to alleviate that burden, by expanding the number of locations where expert providers are available, and establish a system for transferring care of the patients back to their local providers through education and seamless communication with providers.”
ASF CEO, Amanda Moore, says, “We believe that partnering with the Dup15q Alliance will allow us to increase our reach to the AS community and provide the best care for our families. Comprehensive and specific care is critical for AS families throughout the stages of their journey — by partnering with Dup15q we are able to reach thousands of more families with care and support by bringing AS Clinics to their geographical location.”
Dup15q and Angelman Syndromes are two rare conditions that occur due to a problem with the same region of the 15th chromosome. Because of that, they share symptoms (developmental delays, GI problems, seizures, etc.) that often require specialized care. Due to the rareness of the syndromes, local general practitioners and even specialized doctors often do not have a thorough knowledge of the complications and treatments. To get the care their loved ones need, some families have traveled great distances.
Both foundations realized that there were far too many families who were not able to travel to receive specific care, so they embarked on a mission to dramatically expand the clinical reach of the networks and provide truly comprehensive care across the country by combining forces.
The joint expansion of the 15q Clinical Network will also expand the amount of clinical trial sites in the future, increase research and publications, and add important clinical data that can impact the therapeutic treatments relating to both disorders. As always, our goal is to provide each person with dup15q syndrome the opportunity for the best quality of life, while striving for future treatments targeted specifically to the genes affected in dup15q.
This is the not the first time that The Dup15q Alliance and ASF have worked together. Because of the common issues with the 15th chromosome, The Dup15q Alliance and The ASF have co-hosted a research symposium every other year for the past several years. Many researchers that study Angelman Syndrome also study Dup15q Syndome, and the research symposium brings them together to share ideas and collaborate – advancing research and clinical trials.
Our clinics would not exist without our caring supporters. With your donation, families affected by Dup15q Syndrome will continue to have greater access to comprehensive clinical care through the development of The 15q Clinical Research Network.