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Disorders of Sexual Development Program

Positive Reevaluation of Urogenital Differences (PROUD) Clinic

Disorders of Sexual Development Program

The Children’s National Positive Reevaluation of Urogenital Differences (PROUD) Clinic, formerly known as the Differences (or Disorders) of Sexual Development Clinic, provides specialized diagnostic, evaluation and treatment services for children with a variety of rare and complex diseases. Our care, which ranges from prenatal diagnoses to adolescence, is individualized for each patient and always involves families making decisions in coordination with a team of highly trained pediatric specialists.

Our Providers

Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.

Contact Information

For appointments, please call 1-888-884-BEAR (2327) and for information, call 202-476-5631.

 

Differences in Sex Development

Differences in sex development (DSD) include a large and varied number of conditions. They consist of conditions in which the chromosomes, the gonads (testes or ovaries), or internal or external sexual organs are considered atypical. These differences are not as rare as many think and may happen in 0.2% to 1.7% of births. These conditions may be identified in the following ways:

  • Before birth, when genetic testing or ultrasound reveal atypical findings
  • When a baby is born with ambiguous genitalia
  • During evaluation for a hernia in childhood
  • When a teen has abnormal puberty
  • During evaluation for infertility

When the gonads, internal reproductive structures or external genitalia do not grow normally, the child has a difference in sex development. The first question that is usually asked after the delivery of a newborn is, "Is it a boy or a girl?" However, if the genitalia are ambiguous, this question cannot be answered immediately. It is important to avoid guessing the sex or making any assumptions until there is more information about the underlying cause.

PROUD Clinic Services

The PROUD Clinic is led by Veronica Gomez-Lobo, M.D., who works closely with specialists in pediatric endocrinology, urology, gynecology, genetics and psychiatry to create an individual care plan for every patient and family.

Conditions treated in the PROUD Clinic include:

  • Congenital adrenal hyperplasia 
  • 5 alpha reductase deficiency
  • Complete or partial gonadal dysgenesis
  • XX Testicular DSD
  • Ovotesticular DSD
  • Persistent Mullerian duct syndrome
  • Sex-chromosome mosaicism
  • Testosterone synthesis defects
  • Androgen insensitivity syndrome (complete and partial)

Our services include genetic counseling, genetic testing, surgical reconstruction, hormonal therapy and psychological and psychosocial support.

Children’s National is part of the Disorders of Sex Development Translational Research Network (DSD-TRN), a NIH-supported group of medical centers working to improve knowledge about and care for patients with DSD.

Children's National is also a member of the Accord Alliance. Accord Alliance promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD.

A Clinic to Meet the Needs of Families

Every month, Children’s National brings together the Proud Clinic's team of experts to meet with patients and their families. The team specializes in treating differences of sexual development, and provides families with resources and expertise in a compassionate environment. The clinic is held on the fourth Tuesday of every month at the Washington Nationals Diabetes Care Complex at Children’s National Hospital in Washington, D.C. 

If you would like more information about the PROUD Clinic, please contact the Endocrinology office at 202-476-5631 or Tammy Middleton-Walker, RN, at 202-476-4187.

Important Things For You to Know About the Care We Provide

  • Care is individualized for each patient and always involves families making decisions in coordination with a team of highly trained pediatric specialists.
  • Parental consent is required to provide gender-affirming medical care to a minor in the District of Columbia.
  • Our medical care is directed by fully licensed, board-certified attending physicians and is consistent with the standard of care supported by leading medical organizations.
  • We do not provide gender-affirming surgery for anyone under the age of 18.
  • We do not provide hormone therapy to children before puberty begins.

Jordan's Story

Genetic conditions like Jordan's, 16p11.2 duplication syndrome, can be difficult to identify and requires experts like those at the Rare Disease Institute to carefully analyze the patient's symptoms and compare them to other documented cases.

Family Resources

At Children’s National, we understand that families have many questions about their child’s condition and care. Your care providers may offer specific resources, but we also have online resources available to answer your questions and connect you with the information you need.