Attention Deficit Hyperactivity Disorder
Tanya Froehlich, MD, MS, FAAP, leads the Developmental-Behavioral Pediatrics national multi-site research network on attention deficit hyperactivity disorder (ADHD). This working group propelled ADHD-related network research efforts quickly forward. In coordination with Jeff Epstein, PhD, from the Division of Behavioral Medicine and Clinical Psychology, Froehlich led a pilot study on the feasibility of providing electronic behavioral health support to families of preschoolers with ADHD. She also leads network efforts to study the safety and pharmacokinetic profile of Guanfacine use in preschool children with ADHD. Froehlich impact is tremendous within the network to target key priorities and study critically important next level evidence in the treatment and management of young children with ADHD.Down Syndrome
Anna Esbensen, PhD, the director of research for the Thomas Center for Down Syndrome expanded her own research program and collaborations with other sites in the past year, leveraging multiple NIH grants and supplemental funding initiatives to expand existing multi-site trials to include children with Down syndrome. Her current R01 research program evaluating cognitive outcomes for school-age children with Down syndrome in collaboration with Colorado State University received an award of an administrative supplement to expand this research into young adults with Down syndrome (R01 HD093754; co-investigator Susan Wiley, MD). As a multi-principal investigator she received a R61 grant with Froehlich, in collaboration with the University of California-Davis, to evaluate assessment of ADHD in children with Down syndrome and to conduct a pilot clinical trial of methylphenidate in children with Down syndrome and ADHD (R61 HD100934; co-investigator Kelly Kamimura-Nishimura, MD).
In addition to these grants, Esbensen grew collaborations with other sites through receipt of subcontracts from multiple institutions. She continues to work as a subcontract site through the University of California-Davis (R01 HD09654) to evaluate early childhood outcome measures Down syndrome and recently awarded another subcontract through Colorado State University (R01 HD101000) to evaluate executive functioning measures for young children with Down syndrome.
Esbensen is a co-investigator for an additional R61 awarded to Children’s Hospital of Philadelphia (R61 HL151253) to develop behavioral supports for positive airway pressure for children with Down syndrome and comorbid obstructive sleep apnea and supports other research teams in cardiology and ENT for their funded projects related to DS INCLUDE Project funding. She also received funding with Jason Woodward, MD, MS, from LuMind IDSC Foundation and the Down Syndrome Clinical Trials Network (DS-CTN) to assess early markers of dementia and Alzheimer’s disease in adults with Down syndrome.
To support these research projects, Esbensen grew the research team in the division with the addition of four new clinical research coordinators, a research postdoctoral fellow, and two research students.
Esbensen received an invitation to present on ADHD in Down syndrome on an NIH working group on co-occurring conditions across the lifespan in Down syndrome, she continues to serve on the Research Review Committee of DS-Connect (NIH National registry for Down syndrome), and served on two NIH study sections to apply her expertise on Down syndrome to evaluate research proposals submitted for DS INCLUDE funding.
Autism Spectrum Disorders
Julia Anixt, MD, is the director of the Kelly O’Leary Center and the site principal investigator for the Autism Treatment Network, a network of 12 sites focusing on the diagnosis and treatment. This network receives funding from Autism Speaks and the Health Resources and Services Administration Act through the Autism CARES Act. Anixt is instrumental in providing leadership within the network on quality improvement work. Specifically, her leadership guided specific network initiatives such as collection and interpretation of family reported behavioral outcomes. She is also working on developing standardized approaches to recognizing and treating co-morbid conditions such as ADHD, anxiety, and irritability within our clinical system as well as across the network of practices.Establishment of the Center for Dignity in Healthcare for People with Disabilities
Kara Ayers, PhD, associate director of the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), received a national, multi-center three year $1.5 million grant from the Department of Health and Human Services Administration for Community Living. Administration on Disability: Equal Access to Healthcare for People with Intellectual and Developmental Disabilities. This program’s goals are to identify and reduce life-limiting healthcare inequities for people with intellectual and developmental disabilities by improving access to medical protocols that reduce medical discrimination. The coalition includes partners from The Maryland Center for Developmental Disabilities, Boggs Center on Developmental Disabilities, University of Kentucky Human Development Institute, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, National Family Voices, the Autistic Self-Advocacy Network and the American Academy of Developmental Medicine and Dentistry.
The center is the first of its kind and is developing resources for healthcare professionals to understand the civil rights and support the needs of Americans with disabilities as they access routine and lifesaving care throughout the lifespan. In response to the inequities emerging in response to the COVID-19 pandemic, the center developed a number of resources and collaborations with federal agencies, including the Office of Civil Rights and the Centers for Disease Control. The collaborations are now strengthening the overall impact of the project. The center also engages people with intellectual and developmental disabilities and their families to learn more about advocacy related to healthcare discrimination.
