 | David E. Sandberg, Ph.D. Professor, Department of Pediatrics |
Biography
Dr. Sandberg is a pediatric psychologist and clinical researcher. As a clinician, he delivers psychoeducational and behavioral health services to persons with endocrine disorders and their families, in particular, conditions affecting prenatal sex development of the body (ie, disorders/differences of sex development (DSD). DSD are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.
Dr. Sandberg's research program is closely linked to his clinical service. His research group examines the psychosocial adaptation of persons born with DSD, and their families. He shares the role of principal investigator in a registry-based translational research network for DSD designed to extend discoveries in the genetics and pathophysiology of these conditions (DSD-Translational Research Network, NIH R01 HD093450). The 11-site clinical research network will standardize procedures in diagnosis and clinical decision-making and develop tools necessary to translate diagnostic and treatment protocols into clinical best practices.
Dr. Sandberg's focus on the psychosocial aspects of DSD is also reflected in the development of a psychoeducational treatment manual for clinicians caring for newborns with congenital adrenal hyperplasia (CAH) identified by newborn screen (subcontract to the National Newborn Screening and Genetics Resource Center). This preliminary work led to a grant (PI: Sandberg) to create a web-based platform for both providers and parents of newborns/young children with CAH (NIH R41 HD057714).
Dr. Sandberg has also been awarded a grant (PI: Sandberg, NIH R01 HD053637), to design health-related quality of life (HRQoL) measures that focus on issues specific to, and shared by young children with DSD and their families, which are not otherwise covered by generic HRQoL measures.
Genital surgery in young children with DSD is among the most controversial topics in the management of these conditions. To ensure that decisions made by parents in consultation with their child's providers are evidence-based, balanced, and fully informed, Dr. Sandberg was recently awarded a contract from the Patient Centered Outcomes Research Institute (PCORI 1360). This multisite project that involved the input of provider specialists from multiple disciplines, representatives of DSD patient support/advocacy organizations and parents of affected children, delivered a web-based decision support tool and parallel workbook.
Dr. Sandberg’s additional research activities include: a study evaluating how patients with DSD, parents, healthcare providers, and other stakeholders, differentially define optimal care, and development of evidence-based educational curricula for provider, patient and family stakeholders to acquire knowledge and develop skills promoting shared decision making (NIH R01 HD086583); and a project (NIH R01 HD092595) designed to capture the pathways of care received by patients with DSD with a large integrated health care system (Kaiser Permanente).
Dr. Sandberg is also a member of the Sexual and Gender Minority Research Working Group (SGMRWG), and appointed advisory group within the Sexual and Gender Minority Research Office of the National Institutes of Health (NIH). This group is an official Working Group of the NIH Council of Councils, a body that provides advice to the NIH Director on matters related to the policies and activities of the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI).
Education
Post-Doctoral Research Scientist in Psychiatry, College of Physicians & Surgeons of Columbia University, New York, 1988
Postdoctoral Fellow, University of Miami Medical School, Miami, 1983
Ph.D., Psychology (Concentrations: Clinical and Behavioral Endocrinology), Concordia University, Montreal, 1982
M.A., Experimental Psychology, Bar-Ilan University, Israel, 1977
B.A., Psychology, Bar-Ilan University, Israel, 1975
Projects
Defining Successful Outcomes in Disorders (or Differences) of Sex Development
Disorders of Sex Development: A Survey of Clinical Practice
Disorders of Sex Development: Platform for Basic and Translational Research
Family Education for Confirmed Newborn Screen
Health-Related Quality of Life: A Pediatric Clinical and Research Tool