3a-3 Chromosome 22q11.2 Deletion Syndrome Healthy Minds Clinic

2020

Chromosome 22q11.2 Healthy Minds Clinic. CEDD research and clinical faculty, led by Tony Simon, Ph.D., and medical director Kathleen Angkustsiri, M.D., have worked with the support of Robin Hansen M.D., to create, maintain, and expand the 22q11.2 Healthy Minds clinic. Since its inception over six years years ago, the clinic has provided developmental behavioral pediatric and neuropsychological assessments to a large number of children with either deletions, or more recently, duplications at chromosome 22q11.2. Many have been participants in Dr. Simons NIH-funded research program, but there has also been a considerable caseload of new patients. The clinic now operates twice monthly. The clinicians also provide feedback and follow-up support for families and the professionals providing care in their home communities. Follow-up with families shows a high degree of satisfaction with the clinic, greater understanding of the child's disorder, and an increased ability to advocate for and secure services required for educational and intellectual development.

Performing Direct and/or Demonstration Services

Health-Related Activities, Other - Leadership

Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN

Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Specific Groups

Mulit-County

N/A