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Staff Spotlight: David E. Sandberg & Team

Staff Spotlight
March 15, 2023

David Sandberg, PhD and his team, Melissa Gardner, MA, Behzad Sorouri Khorashad, MD, and Zoe Lapham, BS work together with colleagues here at Michigan Medicine, nationally, and internationally to improve healthcare for those affected by congenital conditions affecting reproductive and sexual function (referred to as differences of sex development or DSD).

The Differences of Sex Development – Translational Research Network (DSD-TRN) is a consortium of 16 (and growing) interdisciplinary medical teams and a patient and family network working together to build and grow a patient Registry and Biobank. The only such Network in North America, the DSD-TRN is guided by the principle that standardization of diagnostic and treatment protocols will be associated with higher rates of definitively diagnosed DSD, reduced variation in clinical practice, enhanced patient/family healthcare-related experiences, and improved psychosocial outcomes for patients and their families. As part of Network leadership, Sandberg’s Michigan-based team have focused efforts on Network coordination, Registry building and maintenance, development of educational resources in addition to continued data-driven research endeavors resulting in products that have the potential for improving the quality-of-life experiences of those affected by DSD. Efforts are currently focused on expansion of the Network and application to join the Rare Diseases Clinical Research Network Consortia.

A second major team endeavor involves Shared Decision-Making as applied to children born with a DSD. Assisted by decision aids, shared decision making (SDM) is a process in which patients and providers work together to identify and make decisions based on clinical evidence that balances risks and expected outcomes with patient preferences and values. Early clinical management decisions shared across these conditions include gender of rearing, extent of genetic testing, disclosure of medical information, and genital and gonadal surgery – none of which are associated with a single “best” option in all situations. Sandberg and team have been diligently working to develop educational tools and decision aids. They are now turning their attention toward identifying barriers and facilitators of decision aid implementation.

A third, though certainly not less important, area of focus involves an Update to Clinical Practice Guidelines in Turner Syndrome. David Sandberg (together with David Hong, Stanford University) are co-leading the Neurocognition and Behavior work group charged with updating this section of the 2017 guidelines.

Over this past year, the team has authored and published and presented numerous reports:

Peer-reviewed Publications

  • Gardner M, Brinkman WB, Carley M, Liang N, Lightfoot S, Pinkelman K, Speiser PW, Schafer-Kalkhoff T, Suorsa-Johnson KI, VanderBrink B, Weidler EM, Wisniewski J, Stacey D, Sandberg DE. (2023) Decisional support needed when facing tough decisions: Survey of parents with children having differences of sex development. Front. Urol. 3:1089077. https://doi.org/10.3389/fruro.2023.1089077  
     
  • Lightfoot S, Carley M, Brinkman W, Gardner MD, Gruppen LD, Liang N, Pinkelman K, Speiser PW, Suorsa-Johnson KI, VanderBrink B, Wisniewski J, Sandberg DE, Stacey D. (2023) Co-creating a suite of patient decision aids for parents of an infant or young child with differences of sex development: A methods roadmap. Front. Urol. 2:1020152. https://doi.org/10.3389/fruro.2022.1020152
     
  • Weidler EM, Gardner M, Suorsa-Johnson KI, Schafer-Kalkhoff T, Rutter MM, Sandberg DE, van Leeuwen K. (2023) Surgical decision-making for individuals with differences of sex development: Stakeholders’ views. Front. Urol. 3:1092256. https://doi.org/10.3389/fruro.2023.1092256
     
  • Goodman M, Yacoub R, Getahun D, McCracken CE, Vupputuri S, Lash TL, Roblin D, Contreras R, Cromwell L, Gardner MD, Hoffman T, Hu H, Im TM, Asrani RP, Robinson B, Xie F, Nash R, Zhang Q, Bhai SA, Venkatakrishnan K, Stoller B, Liu Y, Gullickson C, Ahmed M, Rink D, Voss A, Jung HL, Kim J, Lee PA, Sandberg DE. (2022) Cohort profile: Pathways to care among people with disorders of sex development (DSD). BMJ Open, 12:e063409. http://dx.doi.org/10.1136/bmjopen-2022-063409
     
  • Sandberg DE, Gardner M. (2022). Differences/disorders of sex development: Medical conditions at the intersection of sex and gender. Annu Rev Clin Psychol, 18(1), 201-231. https://doi.org/10.1146/annurev-clinpsy-081219-101412  
     
  • Sandberg DE, Vilain, E. (2022). Decision making in differences of sex development/intersex care in the USA: Bridging advocacy and family-centred care. Lancet Diabetes Endocrinol, 10(6), 381-383. https://doi.org/10.1016/S2213-8587(22)00115-2  
     
  • Streur CS, Floody EA, Lapham ZK, Sandberg DE. (2022) The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents. American journal of medical genetics Part A. 2022;188:400-13. https://doi.org/10.1002/ajmg.a.62564
     
  • Suorsa-Johnson KI, Gardner MD, Baskin A, Gruppen LD, Rose A, Rutter MM, Schafer-Kalkhoff T, Stacey D, van Leeuwen KD, Weidler EM, Sandberg DE. (2022) Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives. J Pediatr Urol 18(1):36e1– e17. https://doi.org/10.1016/j.jpurol.2021.10.020
     
  • Suorsa-Johnson KI, Gardner MD, Brinkman W, Carley M, Gruppen L, Liang N, Lightfoot S, Pinkelman K, Speiser PW, VanderBrink B, Wisniewski J, Sandberg DE, Stacey D. (2022) A survey of healthcare professionals’ perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development. J Pediatr Urol, 18(1), 36 e31-36 e17. https://doi.org/10.1016/j.jpurol.2021.10.020  
     
  • Suorsa-Johnson KI, Sandberg DE, Stacey D. (2022). Response to commentary re a survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development. J Pediatr Urol, 19(1), 51-52. https://doi.org/10.1016/j.jpurol.2022.10.03

Conference Presentations

  • Rutter MM, Gardner MD, Dulo M, Suorsa-Johnson KI, Britt AK, Schafer-Kalkhoff T, Wright C, Weidler EM, Van Leeuwen K, Sandberg DE. (May 5-8,2023)  “I believe God doesn’t make mistakes, and I am wonderfully made in His image”: The intersection of religion/faith and clinical care in differences of sex development Poster to be presented at the Pediatric Endocrine Society Annual Conference, Chicago, IL.
     
  • Britt A, Suorsa-Johnson K, Gardner M, Rutter M, Schafer-Kalkhoff T, van Leeuwen K, Fagerlin A, Sandberg D, Weidler E. (March 30 – April 1, 2023) “Love, man, it’s part of life”: Psychosexual health within differences of sex development. Poster to be presented at the Society of Pediatric Psychology Annual Conference, Chicago, IL.
     
  • Lee M, Lapham Z, Britt A, Gardner M, Sandberg DE, Suorsa-Johnson K, the DSD-Translational Research Network Psychosocial Workgroup. (October 28-30) Understanding patient and caregiver knowledge of condition in differences of sex development. Poster presented at The 2022 SACNAS National Diversity in STEM Conference, Puerto Rico.
     
  • Fen Chen H, Rose AM, Mercon K, Cousino MK, Adler J, Gadepalli S, Odetola FO, Sandberg DE, Streur C, Prosser LA. (October 23-26, 2022) A best-worst scaling survey for measuring family spillover effects for children with complex chronic conditions: A pilot study. Society for Medical Decision Making, 44th Annual Meeting, Seattle, WA.
     
  • Ali SR, Gardner M, Xin Y, O’Toole S, Flett M, Lee B, Steven M, Sandberg DE, Ahmed SF. (July 14-16, 2022) Development and validation of a short version of the Quality-of-Life DSD Questionnaire (QoL-DSD) for parents of young children with disorders/differences of sex development. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Poster 48, p.84
     
  • Délot E, Weidler EM, Vilain E, Sandberg DE. (July 14-16, 2022) The DSD Translational Research Network: A platform for discovery and improved clinical care. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Poster 39, p.76
     
  • Papadakis JL, Whitehead J, Chen D, Finlayson C, Johnson EK, Keegan C, Mohnach L, Sandberg DE. (July 14-16, 2022) Psychosocial adjustment in youth with 17-beta hydroxysteroid dehydrogenase 3 deficiency: A case series. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Poster 40, p.77
     
  • Rutter M, Gardner MD, Dulo N, Suorsa-Johnson KI, Britt AK, Schafer-Kalkhoff T, Weidler EM, van Leeuwen K, Sandberg DE. (July 14-16, 2022) “I believe God doesn’t make mistakes, and I am wonderfully made in His image”: The intersection of religion/faith and clinical care in differences of sex development. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Oral Communication 2.3, p.31
     
  • Sandberg DE, Gardner M, Getahun D, Vupputuri S, McKracken C, Goodman M. (July 14- 16, 2022) Pathway to care among people with disorders of sex development: Cohort profile. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Oral Communication 1.4, p.24
     
  • Suorsa-Johnson KI, Gardner MD, Avanceña ALV, Baskin A, Gruppen LD, Khorashad BS, Lightfoot S, Prosser L, Rose A, Rutter MM, Schafer-Kalkhoff T, Stacey D, van Leeuwen KD, Weidler EM, Sandberg DE. (July 14-16, 2022). Defining successful outcomes and trade-offs (DSOT) in differences of sex development: Parlaying stakeholder valuations into educational resources for healthcare providers. Poster presented at the 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Poster 5, p.42
     
  • Suorsa-Johnson KI, Lapham ZK, Gardner MD, Sandberg DE, Fagerlin A. (July 14-16, 2022) Caregiver perceptions of stigma associated with their child’s difference of sex development. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Oral Communication 2.1, p.28
     
  • Van Leeuwen K, Weidler EM, Gardner MD, Mykolajtchuk C, Suorsa-Johnson KI, Schafer-Kalkhoff T, Rutter MM, Sandberg DE. (July 14-16, 2022) Timing of reconstructive surgery for individuals with differences of sex development (DSD): Stakeholder views on successful outcomes. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Oral Communication 1.7, p.27
     
  • Weidler E, Avanceña ALV, Gardner M, Rose A, Rutter MM, Schafer-Kalkhoff T, Suorsa-Johnson KI, van Leeuwen K, Prosser LA, Sandberg DE. (July 14-16, 2022) Designing a best-worst scaling survey for defining successful outcomes and trade-offs in DSD care. 9th I-DSD Symposium, Bern, Switzerland. Sex Dev 2022;16(suppl 1): Oral Communication 1.5, p.25
     
  • Suorsa-Johnson KI, Brinkman W, Carley M, Gardner MD, Gruppen L, Lightfoot S, Speiser PW, Khorashad BS, Sandberg DE, Stacey D. (June 19-22, 2022) Decisional needs of parents of infant born with a disorder/difference of sex development: A survey of parents and healthcare professionals. Oral Presentation, ISDM (International Shared Decision-Making Conference) 2022, Kolding, Denmark.
     
  • Ali SR, Gardner M, Xin Y, O’Toole S, Flett M, Lee B, Steven M, Sandberg DE, Ahmed SF. (June 11-14, 2022) Development and validation of a short version of the Quality-of-Life DSD Questionnaire (QoL-DSD) for parents of young children with disorders/differences of sex development. Oral Presentation (OR05) ENDO 2022 (Annual Meeting of the Endocrine Society), Atlanta, GA.
     
  • Lee PA, Gardner M, Kogan B, Suorsa-Johnson K, Khorashad BS, Sandberg DE. (June 11-14, 2022) Changes in perceptions of pediatric endocrinologists (PE) and urologists (PU) to infants and children regarding care of individuals with 46,XY DSD. e-Poster on Demand Presentation (ODP381) ENDO 2022 (Annual Meeting of the Endocrine Society), Atlanta, GA.
     
  • Suorsa-Johnson K, Lightfoot S, Gardner M, Carley M, Gruppen L, Mohnach L, Johnson J, Stacey D, Sandberg DE. (May 31-June 3, 2022)Supporting shared decision making for parents of infants/young children with disorders/differences of sex development: Creation of a genetic testing decision aid. 5th ELSI Congress (Podium presentation), Virtual.
     
  • Kogan B, Gardner M, Suorsa-Johnson K, Lee P, Mauger D, Sandberg D. (May 13, 2022) Changes in the approach of SPU members to DSD management. Presented at the AUA 2022 Conference, New Orleans, LA.
     
  • Lee P, Gardner M, Mauger D, Suorsa-Johnson K, Groh T, Kogan BA, Sandberg DE. (2022, April 28-30) Pediatric endocrinologist care recommendations in 46,XX classic congenital adrenal hyperplasia (CAH): Changes over time. Poster presented at the Pediatric Endocrine Society 2022 Virtual Annual Meeting.
     
  • Rutter MM, Britt AK, Schafer-Kalkhoff T, Suorsa-Johnson KI, Gardner MD, Baskin AS, Dulo N, Weidler EM, van Leeuwen K, Sandberg DE. (2022, April 28-30) Optimizing Delivery of Care for Patients with Differences of Sex Development (DSD): Perspectives of Patients, Parents, Providers and Other Professionals. Poster presented at the Pediatric Endocrine Society 2022 Virtual Annual Meeting.
     
  • Papadakis J, Whitehead J, Chen D, Finlayson C, Johnson E, Keegan C, Mohnach L, Sandberg DE. (2022, April). Psychosocial adjustment in youth with 17-beta hydroxysteroid dehydrogenase 3 deficiency: A case series. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Rutter MM, Britt AK, Schafer-Kalkhoff T, Suorsa-Johnson KI, Gardner MD, Baskin AS, Weidler EM, van Leeuwen K, Sandberg DE. (2022, April). Optimizing delivery of care for patients with differences of sex development (DSD): Perspectives of patients, parents, providers, and other professionals. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Sorouri Khorashad B, Ernst M, Chen D, Gardner M, Sandberg DE. (2022, April). Gender identity in disorders of sex development: Multidimensional exploration. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Suorsa-Johnson KI, Gardner MD, Avanceña ALV, Baskin A, Khorashad BS, Gruppen LD, Lightfoot S, Prosser L, Rose A, Rutter MM, Schafer-Kalkhoff T, Stacey D, van Leeuwen, K, Weidler EM, Sandberg, DE. (2022, April). Defining successful outcomes and trade-offs in differences of sex development: Parlaying stakeholder valuations into educational resources for healthcare providers. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Suorsa-Johnson KI, Rutter MM, Weidler EM, Sandberg DE. (2022, April). Defining Successful Outcomes and Trade-offs (DSOT) for Clinical Management in Differences of Sex Development: A Mixed-Methods Approach to Inform Curriculum Development. Symposium presented at the Society of Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Weidler EM, Barrett M, Muscarella M, Green J, Indig G, von Klan A, Sandberg DE, Rutter M. (2022, April). An electronic resource repository for differences of sex development (DSD): A tool to assist patients, parents and providers. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
     
  • Weidler EM, van Leeuwen K, Gardner M, Mykolajtchuk C, Suorsa-Johnson KI, Schafer-Kalkhoff T, Rutter MM, Sandberg DE. (2022, April). Timing of reconstructive surgery for individuals with differences of sex development (DSD): Stakeholder views on successful outcomes. Poster presented at the Society for Pediatric Psychology Annual Conference, Phoenix, AZ.
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