Rettsyndrome.org Hosts Learning Collaborative for Rett Clinics

June 4, 2019

Rettsyndrome.org hosted a clinical Learning Collaborative on May 8 and 9 in Denver. The Learning Collaborative is made up of physicians and clinicians from Rett clinics around the country who volunteered their time to share ideas in the spirit of advancing care for Rett families, and to create a universal standard of excellence across all Rett clinics.

Dr. Timothy Benke, Rettsyndrome.org’s Medical Advisor and Director of the Rett Clinic at Colorado Children’s Hospital, invited physicians and clinicians to observe appointments at the multidisciplinary Rett clinic at the Children’s Hospital Colorado (CHC). The CHC clinic sees Rett patients for new and follow-up appointments once a month. During an appointment, Rett families have the opportunity to meet with up to 15 specialists who provide care in the multidisciplinary clinic. Families stay in one comfortable location, while the sub-specialists come to them in their exam room. Members of Learning Collaborative had the opportunity to ask questions, share knowledge, and identify opportunities for innovation and improvement within their respective clinics. Many from the group commented on CHC’s ideal clinic space and were impressed by the organization and flow of the clinic provided by nurse coordinator, Tristen Dinkel, RN.

Samantha Brant, RSO Family & Community Engagement Manager, toured the Rett clinic and participated in the Learning Collaborative. “It was wonderful to meet families in person,” she shared, “and it was also incredible to see clinicians and physicians who have dedicated their lives to Rett coming to share ideas and learn from one another. It was a great picture of community unity. As a parent, Rett syndrome is our assigned mission. We didn’t get the choice, but these clinicians did. I hold this very close to my heart.”

The Learning Collaborative also met with representatives from the Rocky Mountain Rett Association (RMRA) to discuss the partnership between parent support groups and local clinics. RMRA helped open the CHC clinic in in 2010 and continues to support the clinic financially. Dr. Benke says, “Without their support, we would not have been able to start our clinic and grow with the needs of our population.” He went on to say that their Rett clinic has allowed them to get their foot in the door and become a focal point for clinical trials and the natural history study, which Dr. Benke says, “interests a lot of our families.” Additionally, the partnership of [the International Foundation of CDKL5 Research] has helped grow their clinic each year.

The Learning Collaborative continued with lively sessions focused on defining evidence-based clinical guidelines and quality measures. There was an energy in air and members were excited to work together.

 

The group will continue working on developing guidelines and metrics clinics can adopt to serve our community better. Not every clinic will offer the same multidisciplinary services, but “our goal,” shares Dr. Benke, “is to provide evidence-based guidelines so that whether or not you are a family from Denver or Des Moines, you can get the same quality care for Rett.”

Melissa Kennedy, Rettsyndrome.org Executive Director, shared, “I was impressed by everyone’s strong desire to work together, to make sure they are all up to date so that patients are receiving the best care. The clinics also want to be able to provide a strong clinical network for clinical trials so that pharmaceutical companies will want to invest in Rett syndrome research, which is very exciting for our families.”

The team at Rettsyndrome.org and Dr. Benke are very grateful for the participation of the clinicians and physicians present, as well as the warm welcome from the Rocky Mountain Rett Association and the Rett clinic at Children’s Hospital Colorado.



The Learning Collaborative began in December of 2018 as an initiative by Rettsyndrome.org to provide best in class care across all Rett clinics, prepare clinics for clinical trials and lay the foundation to establish future Rett clinics in where needed.

Pictured above:
Bob Shorma (RMRA), Laura Watne (Children's Hospital Colorado), Tristen Dinkel (CHC), Mary Jones (UCSF), Pat Callahan (RMRA), John Schaffner (RMRA), Les Lee (CHC), Samantha Brant (RSO), Anne Stratton (CHC), Connie Smith-Hicks (KKI - Kennedy Krieger Institute), Tim Feyma (Gillette), Kathleen Reynolds (RMRA), Carrie Rose (RMRA), Justin Allen (RMRA), Tim Benke (CHC), Daniel Tarquinio (Center for Rare Neurological Diseases), David Lieberman (Boston Children's), Grace Bazin (Boston Children's), Nicole Korte (CHC), Heidi Grabbenstatter (International Foundation for CDKL5 Research (IFCR)), Kim Hollandsworth (KKI), Jennifer Pavelka (RSO), Melissa Kennedy (RSO)