Patient Journey: What to Expect

We welcome first-time patients, physician referrals, or individuals seeking second opinions to the Differences of Sex Development (DSD) program.

How Long Will My Appointment Last?

On your first visit, you will see up to five different providers individually.
You will then meet with someone who will go over your next steps and highlight important information from your visit.
You should expect to be at the clinic for around three to four hours, in total.
Your future visits may also be lengthy: We want you to meet with all the relevant providers to address the full spectrum of care needs at each visit.

Please bring with you any outside medical records that relate to your current or previous DSD care, if possible.
This may include X-rays, lab results and other test results.
If bringing them with you at your first visit is not possible, you may provide these documents at a later date.

On the day of your visit, you will meet with doctors from the following specialties, as needed:
We coordinate these visits in one location for your convenience.
These specialists may ask questions about your child’s medical history and emotional well-being and will also perform a physical exam.
Note: If you or your child have any questions about the physical examination, we encourage you to share them with us. We want you to be as comfortable as possible throughout the process.

To confirm your diagnosis, the DSD team may recommend imaging, blood tests, exams or evaluations, and other DSD tests.
Throughout the process, we provide ethically sound treatment plans with long-term follow-up care.
Our team communicates information directly with you and your child so that we can make shared treatment decisions, and so you and your child can give “informed consent” for tests and procedures. This means that you understand the risks, benefits, limitations, and potential meaning of a particular procedure and its results.
As part of your treatment plan, you and your child will have access to emotional and mental support. (This may also be referred to as “psychosocial support.”) This emotional support is provided by a counselor, psychiatrist and/or psychologist.

During your visit, one of our team members may speak with you about the opportunity to have information about your child’s condition, treatment and outcomes added to DSD research registries.
The purpose of these research registries is to establish clinical best practices for all patients who have differences of sex development.
Note: Participating in research registries is optional, and we will respect whatever decision you and your child make.

To learn more about support available to people with differences of sex development, we encourage you to view our DSD Resources.
To learn more about differences of sex development conditions.