NFXF Clinical Trials Committee: Shaping the Future of Fragile X Clinical Trials

Rebecca Shaffer, PsyD, HSPP, is a professor of pediatrics at Cincinnati Children’s Hospital, and she specializes in both clinical care and research with Fragile X syndrome and autism spectrum disorder. She is also the director of psychological services for the Cincinnati Fragile X Center. Her research is primarily focused on emotion dysregulation in both FXS and ASD. She enjoys helping individuals find ways to calm their bodies and minds and fully engage in the world around them. She also enjoys helping caregivers find ways to best support them in this process. “It is truly a pleasure to work with the Fragile X population and their families.”

Barbara Haas-Givler, MEd, BCBA, is a board-certified behavior analyst in Lewisburg, Pennsylvania. Ms. Haas-Givler has extensive experience in special education. She has served in many different capacities over the course of her career, including classroom teacher, administrator, educational consultant, behavior analyst, and research associate for clinical pharmaceutical trials.

Ms. Haas-Givler has been a long-time member of the Fragile X community. Her dedication to providing families living with Fragile X strategies for success has greatly impacted over the years. She is also a member of the NFXF Clinical Trials Committee.

Craig A. Erickson, MD, is a professor of Psychiatry at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine-Affiliated. Dr. Erickson leads a neurodevelopmental clinical and research group focused on improving clinical care through research discovery. He is the director of the Cincinnati Fragile X Research and Treatment Center, one of the largest such programs in the world. He serves as the chair of the Clinical Trials Committee organized by the National Fragile X Foundation and is a leader in translational medicine efforts in Fragile X syndrome, autism, and related disorders. Additionally, he is the director of research in the Division of Psychiatry at Cincinnati Children’s Hospital. 

Cora Taylor, Ph.D. is an associate professor, clinical psychologist and Chair of the Department of Developmental Medicine at Geisinger. Dr. Taylor completed graduate training at the University of Tennessee and a research and clinical postdoctoral fellowship at Vanderbilt University. She has expertise in the diagnostic evaluation of children with a range of developmental concerns. At Geisinger, Taylor conducts research, leads the phenotypic battery selection, and oversees a variety of research protocols. Her focus is on the phenotypic characterization of people with rare genetic conditions. Taylor has experience in engaging both families and family-based organizations for rare genetic conditions in research through online participation that is offered internationally to interested patients and families.

Dr. Lauren Ethridge is a neuroscientist specializing in EEG biomarker development as outcome measures for clinical trials in Fragile X Syndrome. She is particularly interested in disability advocacy, and in translating basic science work into clinical and community applications that help improve health in Fragile X.

Nicole Tartaglia, MD, attended university and medical school at the University of Colorado. She completed her training in general pediatrics at Children’s Hospital Los Angeles, and fellowship training in developmental-behavioral pediatrics at the University of California Davis MIND Institute, where her research focused on children and adults with developmental disabilities, chromosomal abnormalities, Fragile X syndrome, and autism spectrum disorder. She also obtained her master’s in clinical investigation from the University of Colorado Graduate School.

Since 2007, Dr. Tartaglia has worked as faculty for the Colorado School of Medicine at Children’s Hospital Colorado in the Department of Pediatrics Section of Developmental Pediatrics, where she founded and directs the eXtraordinarY Kids Clinic for children and adolescents with sex chromosome disorders, and is also the director of the Denver Fragile X Clinic. In these clinics, she leads multidisciplinary teams that include medical providers, genetic counseling, psychology, speech-language therapy, occupational therapy, nursing, and social work, and collaborates extensively with community providers, therapists, and schools to provide optimal care for these special populations.  She also evaluates and treats children with general developmental delays, autism spectrum disorder, ADHD, and other neurogenetic disorders.

Dr. Tartaglia has federally funded research projects evaluating natural history and outcome measures in sex chromosome disorders and Fragile X and collaborates with national networks of clinics to develop best practices for treatments of these conditions. She is also very active in clinical trials of targeted treatment medications for neurobehavioral features and developmental disabilities. Dr. Tartaglia is also a member of the NFXF’s Clinical Trials Committee.

Anne Hoffmann, PhD, CCC-SLP, is an assistant professor and speech-language pathologist in the Communication Disorders & Sciences and Pediatrics departments at Rush University. Her research examines language and social communication development in individuals with neurodevelopmental disorders, especially Fragile X syndrome. Her teaching and clinical interests focus on pediatric speech and language disorders. Hoffmann completed her doctoral work at The Ohio State University and then completed her post-doctoral position in pediatrics at Rush University.

Anna joined the NFXF in 2024. She found her way to the Fragile X community through her many years of work as a clinical research coordinator at Rush University Medical Center in Chicago. There she worked on research in the pediatric neurology division, with a special interest in Fragile X. Anna earned her bachelor’s in psychology and obtained a clinical research coordinator (CCRC) certification through the ACRP. She likes to take time to enjoy life’s simple pleasures, loves traveling and exploring new cultures, and spending quality time with her dog, family and friends.

Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for several years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s in psychology, an MBA, and was previously a SOCRA-certified clinical research professional (CCRP). She enjoys spending time with her family, including her young daughter and Boston Terrier, as well as curling up with a good book.