Attitudes Towards Fertility Preservation in Patients with DSD

What is a Difference of Sex Development (DSD)*?

Conditions that are often classified as differences of sex development (DSD) occur more frequently than most people realize. An estimated one in 4,500 children has such a condition. Human development is a complicated process and slight differences in the usual process can result in variations in sex development. Many times these differences are found at birth, but sometimes they can be found later in life. Sex development happens in stages.  A fetus goes along different paths to develop into a boy or a girl. Sometimes, the fetus takes a less common path of sex development and this results in a condition that can be classified as a DSD.

*DSD is a term in evolution, and we recognize that some individuals with variations in sex development may not identify with this term.

Why Are We Doing This Research Study?

We are trying to better understand the healthcare needs of adolescents and young adults who have a diagnosis that could be considered a DSD.  Specifically, we want to learn more about opinions related to reproductive health and potentially having children. This research will enable us to find better ways to answer questions and concerns individuals and families may have when making decisions about reproductive health and having children.

Who Is Eligible to Participate?

  • Parents of individuals 0-30 years who have been diagnosed with a DSD
  • Individuals ages 13-30 who have been diagnosed with a condition of DSD
  • Able to read and speak English

What Do You Have to Do If You Are in This Research Study?

The study involves participating in a single focus group lasting 1-1.5 hours at Lurie Children’s. If you do not feel comfortable discussing this in a group, or cannot travel to Chicago we can arrange for a one-on-one interview with one of our researchers.
How can you sign up for this research?

Please contact Ilina Rosoklija, MPH at 312.227.6409 or​.

Your participation in our research study will be compensated with light refreshments, complimentary parking and a $30 Visa gift card.

Research Study Staff

Principal Investigator:
Emilie Johnson, MD, MPH

Courtney Finlayson, MD
Diane Chen, PhD
Ilina Rosoklija, MPH