David E. Sandberg, Ph.D.
Ann Arbor, Michigan 48109-5456
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 served as a member of the Sexual and Gender Minority Research Working Group (SGMRWG), an appointed advisory group within the Sexual and Gender Minority Research Office of the National Institutes of Health (NIH). He is also currently a member of the American Psychological Association Task Force on Differences of Sex Development.
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
- Defining Successful Outcomes in Disorders (or Differences) of Sex Development
- Disorders of Sex Development: A Clinician Survey
- Disorders/Differences of Sex Development (DSD) - Translational Research Network
- Family Education for Confirmed Newborn Screen
- Health-Related Quality of Life: A Pediatric Clinical and Research Tool
- Pathways to Care and Health Outcomes among DSD Patients
Gravholt CH, Andersen NH, Conway GS, Dekkers OM, Geffner ME, Klein KO, Lin AE, Mauras N, Quigley CA, Rubin K, Sandberg DE, Sas TCJ, Silberbach M, Söderström-Anttila V, Stochholm K, van Alfen-van derVelden JA, Woelfle J, Backeljauw PF.
Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting
Eur J Endocinol. 2017 Sep;177(3):G1-G70. doi: 10.1530/EJE-17-0430.
Ernst MM, Liao L-M, Baratz AB, Sandberg DE.
Disorders of Sex Development/Intersex: Gaps in Psychosocial Care for Children
Pediatrics. 2018 Aug;142(2). pii: e20174045. doi: 10.1542/peds.2017-4045.
Timmermans S, Yang A, Gardner M, Keegan C, Yashar BM, Fechner PY, Shnorhavorian M, Vilain E, Siminoff LA, Sandberg DE.
Does Patient-centered Care Change Genital Surgery Decisions? The Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics
J Health Soc Behav. 2018 Dec;59(4):520-535. doi: 10.1177/0022146518802460.
Gardner M, Sandberg DE.
Navigating Surgical Decision Making in Disorders of Sex Development (DSD)
Front Pediatr. 2018 Nov 19;6:339. doi: 10.3389/fped.2018.00339.
Sandberg DE, Singer D, Bugajski B, Gebremariam A, Scerbak T, Dooley Maley KL, Scurlock C, Culin D, Eder S, Silberbach M.
Research priorities of people living with Turner syndrome
Am J Med Genet C Semin Med Genet. 2019 Mar;181(1):43-51. doi: 10.1002/ajmg.c.31676.