Tuberous Sclerosis Complex Autism Center of Excellence Research Network (TACERN) Trains CALEND Fellows in Research, Clinical Skills, and Leadership

Submitted by: Marian E. Williams, PhD, California-USC UCEDD/LEND

The Tuberous Sclerosis Complex Autism Center of Excellence Research Network (TACERN) brings together a group of five children's hospitals located throughout the U.S., all affiliated with LEND interdisciplinary training programs, to conduct research on autism spectrum disorder (ASD) in young children with tuberous sclerosis complex (TSC). The project is funded by NIH/NINDS to conduct a longitudinal study to identify early biomarkers of ASD in infants with TSC, and the Principal Investigators are Mustafa Sahin, MD, from Boston Children's Hospital and Darcy Krieger, MD, from Cincinnati Children's Hospital. A unique aspect of the study is the collaboration with LEND training programs, and a major goal of the project is to work with the affiliated LENDs to improve ASD diagnosis and treatment in TSC and facilitate combined training in ASD and TSC so as to engage ASD researchers in educational and research activities in TSC and vice-versa.

Now in its fourth year of funding, TACERN has provided training in research and clinical diagnostic skills for psychology postdoctoral fellows at the USC UCEDD and CA-LEND. So far, 7 fellows have participated in the project. Training activities and roles have included (1) participating in didactic trainings about TSC and about autism assessment and diagnosis, (2) becoming research reliable in the ADOS-2 and the ADI-R, (3) administering, scoring, and interpreting neurodevelopmental and autism assessments for children from ages 3 months to 3 years, and (4) participating in collaborative/calibration multi-site meetings. Recently, our group began examining data from the larger dataset about access to early intervention services for young children with TSC, comparing access to services for children from different ethnic backgrounds, geographic regions, and levels of developmental delay.

The current fellows participating in the project appreciate the opportunity to gain clinical skills in working with medically fragile infants with a range of developmental needs.
Juana Vaquero, PhD, Psychology Postdoctoral Fellow writes: "Participating in the TACERN research study is helping me refine my clinical skills for assessing the development and socio-emotional functioning of infants and toddlers. Additionally, through my participation in this study, I am developing greater insight about how a genetic disorder, such as tuberous sclerosis complex (TSC), can impact development . . . of infants and toddlers."
Kristen Joyner, PsyD, Psychology Postdoctoral Fellow says: "Participating in TACERN has challenged me to enhance my clinical assessment skills in a fast paced medical environment. It has also further clarified the importance of family centered care and the value of providing families with ongoing feedback regarding their child's developmental progress. I have improved in my ability to provide concise recommendations that support a child's overall development and social-emotional functioning. Overall, I believe that the skills that I have gained from participating in this study complement my ongoing work within the field of infant and early childhood mental health."
Since the project's inception, five CA-LEND fellows who worked on the project have graduated and moved on to leadership roles utilizing the skills learned through TACERN. They are pleased to share the impact of TACERN on their current work:
Eliza Harley, PhD - Clinical Assistant Professor, UC San Diego & Psychologist at Rady Children's Hospital San Diego: "My training through TACERN helped to refine my clinical assessment skills, better understand the importance of interdisciplinary collaboration, and become more aware of medical conditions that co-occur with autism spectrum disorders."
Lisa Linder, PhD - Assistant Professor, San Diego State University: "One of the most valuable parts of the TACERN project for me was participation in a multi-site, large scale research project on the organizational level, through the calibration meetings. It was so valuable to see how a large scale research project can maintain quality control and calibration across multiple sites and researchers. The rigorous and methodical approach to the project was enlightening. I think this is invaluable for my current position and to support my own research efforts as I work towards tenure."
Jenna Ouye, PhD - Licensed Psychologist, USC UCEDD at Children's Hospital Los Angeles: "It has been such a unique learning opportunity to be able to follow children over time as part of the TACERN study. I've gained knowledge in understanding the varying etiologies and symptom development of TSC and autism. It has also been a privilege to build relationships with families, as well as support them with developmental guidance and service navigation."
Natalie Gart, PsyD - Behavioral Health Clinician at Rocky Mountain Health Centers Pediatric, Denver, CO: "I most appreciated the longitudinal aspect of the study. It not only allowed us to form relationships with the families, but was also interesting from an assessment perspective to understand what the tests were measuring on a deeper level. I also really enjoyed the opportunity to be part of a multi-site NIH study. It was inspiring to think about the magnitude of the data and the impact that could have in understanding development and Autism Spectrum Disorder."
Seema Jacob, PsyD - Assistant Professor, Dept of Pediatrics, University of New Mexico: "The opportunity to work on TACERN helped me grow tremendously as an early childhood clinician. I learned about TSC and the impact of this condition on the child and his/her family; learned new assessment tools and how to conduct developmental evaluations in a fast-paced medical environment; learned to effectively integrate information about the child and the family through different sources (observations at the appointments, interviews with caregivers, neurodevelopmental assessment, neurologists, EEG specialist); collaborated with other providers involved with the family (medical providers in the TACERN study, as well as other EI agencies in the family's community); and learned to appropriately communicate the findings to the family as well as educate families about development, and early intervention services/necessary community resources. In short, the experience helped me continue to provide interdisciplinary, family-centered services to children and their families within a research study."

Photo caption: Current TACERN CA-LEND team, including (left to right): Juana Vaquero, PhD, Kristen Joyner, PsyD, Marian Williams, PhD, & Jenna Ouye, PhD