Center for Congenital Adrenal Hyperplasia (CAH) and Disorders of Sex Development (DSD)
Make an Appointment
Call the Pediatric Call Center
Be sure to specify that the appointment is for the Center for CAH and Disorders of Sex Development.
The Center for Congenital Adrenal Hyperplasia (CAH) and Disorders of Sex Development (DSD), is a multidisciplinary clinical care and research facility that is built upon a unique collaboration between healthcare professionals at the University of Minnesota Medical Center and the Minnesota Department of Health Newborn Screening program (MDH-NBS). The Center addresses the varied and long-term spectrum of clinical needs for patients with CAH and other rare disorders of sex development.
The Center's multidisciplinary health care team, which includes a pediatric endocrinologist/geneticist, pediatric urologic surgeon, OB-GYN, psychologists specializing in sexual health, advanced practice and research nurses, genetic counselors, and a public healthcare coordinator/newborn screening follow up specialist from the Minensota Department of Health.
We offer comprehensive diagnostic evaluations, consultations and coordinated follow up care based upon the initial clinical encounter. On going follow up, based on individual and team assessments, is facilitated. Team recommendations are summarized in a comprehensive report that is shared with the patient/family and primary care provider.
Clinical research participation opportunities are available to eligible subjects for new monitoring and treatment modalities. The Center also serves as a resource for educational materials geared toward patients, parents and primary care providers.
What to Expect
A typical visit may include one-on-one consultations with the following specialists:
- Pediatric Endocrinologist/Geneticist for evaluation/diagnosis of disorder; monitoring of disease control, growth, puberty, and other concerns; treatment options; and provide medical information about the disorder.
- Genetic Counselor who will obtain the family pedigree; provide genetic counseling; facilitate the collection of DNA testing; make plans to review and discuss the results at the next visit.
- Psychologist who specializes in disorders of sex development to assess the patient's and family's ability to cope with issues associated with the various disorders (which may include delayed puberty; gender issues; options for medical and surgical treatment).
- OB-GYN for evaluation, monitoring and treatment, if necessary.
- Nurse Practioner who will explain and initiate the Emergency Medical Plan (including web based plan for physicians at other hospitals in case of emergency); provide additional material about the disorder and discuss any other concerns the patient or parent may have.
- Pediatric Urology Surgeon, if surgery is being considered.
The patient and family meet with the team to review findings and recommendations. Ask questions and make a plan for follow-up.
Two weeks later
The patient and family receive a comprehensive clinic report, which includes recommendations of all of the specialists and health care professionals who saw the patient and family at the center.