SPROUT Research

Members of our SPROUT team lead and are involved in various research studies to better understand DSD and intersex conditions and learn how to improve care for our patients.

Some topic areas of research in SPROUT clinic include: decision-making, genetic testing, psychosocial outcomes, and fertility (including gonadal tissue cryopreservation).

If you are interested in learning more about research in our clinic, please reach out to sproutresearch@luriechildrens.org


Featured Studies

DSD Biobank

Principal Investigator: Courtney Finlayson, MD

We have created a “Biobank” where we can store blood samples and information from patients seen in our clinic for research. Because the conditions we care for in SPROUT clinic are relatively rare, a biobank will allow us to pool information in one place in order to improve research. The goals of this study are to use these stored samples to learn more about what causes these conditions, and how these conditions affect fertility (the ability to have children) and other body parts and systems.

Who qualifies?

Anyone with a DSD condition who is seen in SPROUT Clinic is eligible to contribute a blood sample to our biobank.

Join the Study

Contact sproutresearch@luriechildrens.org for more information.

This study is Lurie Children’s IRB 2022-5571, Biobanking specimens from patients with Differences in Sex Development to create induced pluripotent stem cells and perform genetic analyses for research, PI: Dr. Courtney Finlayson. This content has been approved by the Lurie Children’s IRB. 

Development of a Decision Aid for Youth with Differences of Sex Development

Principal Investigator: Jaclyn Papadakis, PhD

Co-Investigator: Diane Chen, PhD

The purpose of this study is to learn more about the medical decision-making needs of young people with DSD. We will use this information to create a decision-making aid to help future families navigate medical decision-making regarding their condition. This study includes adolescents and young adults with DSD conditions, and parents of youth with these conditions.

Equitable Measurement of Care Disparities and Needs in Youth with Differences of Sex Development

Site Principal Investigator: Diane Chen, PhD

The purpose of this study is to work with a diverse sample of youth and young adults with DSD to create and test a self-advocacy tool. The resulting tool will measure DSD health-related distress to help provide personalized care.


Ongoing Collaborative Research Initiatives

Gonadal Tissue Cryopreservation

The SPROUT team partners with colleagues in the Lurie Children’s Fertility & Hormone Preservation & Restoration Program (FHPR) to offer investigational gonadal tissue cryopreservation to patients who are undergoing gonadectomy or other gonadal surgical procedures. Learn more about the Fertility & Hormone Preservation Program.

DSD-TRN

We are a member of the DSD Translational Research Network (DSD-TRN), a partnership with other hospitals in the United States to improve our knowledge and care for patients with DSD.

For more information, visit the DSD-TRN website


Selected Publications

A full bibliography can be found on our providers’ individual faculty profiles.

Fertility discussions: Perspectives of adolescents and young adults with differences of sex development.
Papadakis JL, Poquiz JL, Nahata L, Kapa HM, Buchanan C, Chan YM, Hansen-Moore J, Crerand CE, Tishelman AC, Chen D.

Gonadal Tissue Cryopreservation for Children with Differences of Sex Development.
Johnson EK, Finlayson C, Finney EL, Harris CJ, Tan SY, Laronda MM, Lockart BA, Chen D, Rowell EE, Cheng EY, Yerkes EB.

Minority stress and resilience experiences in adolescents and young adults with Intersex variations/differences of sex development (I/DSD).
van de Grift T, Dalke K, Yuodsnukis B, Dalke K, Davies A, Papadakis JL, Chen D. 

Patients’ and Caregivers’ Attitudes toward “Disorders of Sex Development” Nomenclature.
D’Oro A, Rosoklija I, Jacobson DL, Finlayson C, Chen D, Tu DD, Austin PF, Karaviti LP, Gunn SK, Nahata L, Kapa HM, Kokorowski PJ, Kim MS, Messina AC, Kolon TF, Yerkes EB, Cheng EY, Johnson EK.

Prenatal detection and evaluation of differences of sex development: A qualitative interview study of parental perspectives and unmet needs.
Whitehead J, Hirsch J, Rosoklija I, Goetsch Weisman A, Dungan J, Finlayson C, Chen D, Johnson EK.

Proximal Hypospadias-Isolated Genital Condition or Marker of More?
Johnson EK, Jacobson DL, Finlayson C, Yerkes EB, Goetsch AL, Leeth EA, Cheng EY.

Screening for pediatric parenting stress in parents of youth with differences/disorders of sex development.
Papadakis JL, Poquiz JL, Johnson EK, Finlayson C, Chen D. (2021).