Angelman Syndrome Clinics – What to Expect

Quick Overview

The session at the 2017 ASF Family Conference discussed the expanding network of Angelman Syndrome clinics. The session included presentations from four clinics: Mayo Clinic, University of North Carolina (UNC) Clinic, Massachusetts General Hospital (MGH), and a clinic in San Diego. Each clinic provides a range of services, including genetic counseling, neurological consultations, sleep medicine, psychiatry, and more. The clinics aim to provide comprehensive care for both children and adults with Angelman Syndrome, and work closely with local providers. Insurance coverage for behavior intervention and other services varies depending on the insurance company and state. The clinics are working on advocacy efforts to improve insurance coverage for Angelman Syndrome. The San Diego clinic is still in the process of opening, but updates will be provided in the future.

Introduction

In this session at the 2017 ASF Family Conference, the expanding network of Angelman Syndrome clinics is discussed. The session includes presentations from four clinics, each providing an overview of their services and what families can expect when accessing their care. The clinics aim to improve the care and understanding of Angelman Syndrome, and provide a platform for clinical trials and new treatments. The clinics also work closely with the Angelman Syndrome Foundation and collaborate with each other.

Mayo Clinic

Dr. Elisa Gavrilova, Clinic Director at Mayo Clinic, provides an overview of their clinic. Mayo Clinic is one of the established clinics and has been operating for over a year. The clinic focuses on providing care for both adults and children with Angelman Syndrome, with the aim of learning more about the natural history of the disease. The clinic also aims to set up a network for clinical trials and new treatments. The clinic has a multidisciplinary team of providers, including genetics, neurology, speech development, orthopedics, and social work. The flow of patients at Mayo Clinic involves a questionnaire before the visit to understand the top problems that need to be addressed. Patients then go through various subspecialties before returning to genetics for a summary of recommendations.

University of North Carolina (UNC) Clinic

Margaret DeRamus, a speech-language pathologist at UNC Clinic, provides an overview of their clinic. UNC Clinic was the first to start an interdisciplinary clinic for Angelman Syndrome in 2012. The clinic offers a comprehensive one-day visit that includes genetic counseling, neurological consultation, psychiatry, speech-language pathology, physical therapy, and social work. The clinic aims to provide recommendations and support for families, and offers ongoing consultation and communication with local providers. UNC Clinic has seen 95 patients to date, with primary referral concerns including communication, seizures, sleep management, behavior, and anxiety.

Massachusetts General Hospital (MGH) Clinic

Dr. Ron Thibert presents the MGH Clinic, which focuses on providing care for individuals with Angelman Syndrome. The clinic initially started as a seizure clinic but expanded to include other specialties such as sleep medicine, psychiatry, and gastroenterology. The clinic has seen 240 patients to date, ranging from infants to adults in their 30s. The clinic aims to provide sustainable clinical consultation and direct care services, and offers tele-visits for ongoing treatment. The clinic is working on increasing behavioral services and improving coordination of clinic days to provide more efficient care.

San Diego Clinic

Dr. Mark Nespeca discusses the San Diego Clinic, which is in the final stages of development. The clinic aims to provide clinical services for individuals with Angelman Syndrome and is a collaboration between Rady Children’s Hospital San Diego and UC San Diego. The clinic will offer various specialties, including neurology, genetics, gastroenterology, and nutrition. The clinic will provide after-visit summaries and recommendations, and will also offer an option for payment outside of insurance plans. The clinic is expected to open in the fall.

Questions and Discussion

During the session, attendees had the opportunity to ask questions to the presenters. Topics discussed included insurance coverage for behavior intervention, reimbursement by Medicare and Medicaid, and preparation for the California clinic. The presenters provided information on insurance coverage, regional center services, and the process for booking appointments at the clinics.

Conclusion

The session on Angelman Syndrome clinics provided valuable insights into the services and expectations for families accessing care. The clinics aim to improve the understanding and treatment of Angelman Syndrome, and offer a range of specialties to address the unique needs of individuals with the condition. The clinics work closely with families and local providers to provide ongoing support and consultation.