46,XY ovotesticular difference of sex development

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1Active trials8Treatment centers

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Overview

46,XY ovotesticular difference of sex development (DSD), previously known as 46,XY true hermaphroditism, is a rare condition in which a person has a male chromosome pattern (46,XY) but develops both ovarian and testicular tissue in their body. This means the gonads (sex organs) contain a mix of egg-producing (ovarian) and sperm-producing (testicular) tissue, sometimes in the same gonad (called an ovotestis) or as separate ovary and testis on different sides. Because of this mixed gonadal tissue, the body may produce both male and female hormones, leading to differences in how the external and internal reproductive organs develop. Some individuals may have ambiguous genitalia at birth, meaning the external sex organs do not look clearly male or female. Others may have genitalia that appear mostly male or mostly female but with some atypical features. Internal structures such as a uterus, fallopian tubes, or male reproductive ducts may be partially or fully present. Puberty can bring unexpected changes, such as breast development in someone raised as male, or lack of expected development. Treatment is individualized and may include hormone therapy, surgical options to align the body with the person's gender identity, psychological support, and long-term monitoring of gonadal tissue for health risks. A team of specialists works together to support each person's physical and emotional well-being.

Also known as:

Key symptoms:

Ambiguous genitalia at birthOne gonad that contains both ovarian and testicular tissuePresence of both a testis and an ovary on different sidesUndescended testicle or inguinal hernia in infancyA uterus or partial uterus found on imagingBreast development during puberty in someone raised as maleIrregular or unexpected menstrual bleedingInfertility or reduced fertilityDifferences in genital appearance that become more noticeable at pubertySmall penis or enlarged clitorisOpening of the urethra in an unusual position (hypospadias)Hormonal imbalances during pubertyPsychological distress related to body differences or gender identity

Clinical phenotype terms (19)— hover any for plain English
EpispadiasHP:0000039ChordeeHP:0000041Perineal hypospadiasHP:0000051Abnormal clitoris morphologyHP:0000056Abnormal labia morphologyHP:0000058Fused labia minoraHP:0000063GonadoblastomaHP:0000150Abnormality of prenatal development or birthHP:0001197True hermaphroditismHP:0010459Abnormality of the female genitaliaHP:0010460Abnormality of the male genitaliaHP:0010461Abnormal sex determinationHP:0012244Hyperpigmented genitaliaHP:0030258OvotestisHP:0012861Urogenital sinus anomalyHP:0100779
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Apr 2018Gonadal Tissue Cryopreservation for Fertility Preservation in Children with a Disorder of Sex Development

Erin Rowell

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for 46,XY ovotesticular difference of sex development.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Other1 trial
Gonadal Tissue Cryopreservation for Fertility Preservation in Children with a Disorder of Sex Development
Actively Recruiting
PI: Erin Rowell, MD (Ann & Robert H Lurie Children's Hospital of Chicag) · Sites: Chicago, Illinois · Age: 030 yrs

No specialists are currently listed for 46,XY ovotesticular difference of sex development.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to 46,XY ovotesticular difference of sex development.

Search all travel grants →NORD Financial Assistance ↗

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.What type of gonadal tissue does my child have, and what does that mean for their health?,Is there a risk of gonadal tumors, and how will we monitor for that?,What are the options for hormone therapy, and when should it start?,Should any surgery be considered now, or is it better to wait until my child can participate in the decision?,What genetic testing has been done, and should additional testing be considered?,Are there fertility preservation options we should discuss?,Can you refer us to a psychologist or support group experienced with differences of sex development?

Common questions about 46,XY ovotesticular difference of sex development

What is 46,XY ovotesticular difference of sex development?

46,XY ovotesticular difference of sex development (DSD), previously known as 46,XY true hermaphroditism, is a rare condition in which a person has a male chromosome pattern (46,XY) but develops both ovarian and testicular tissue in their body. This means the gonads (sex organs) contain a mix of egg-producing (ovarian) and sperm-producing (testicular) tissue, sometimes in the same gonad (called an ovotestis) or as separate ovary and testis on different sides. Because of this mixed gonadal tissue, the body may produce both male and female hormones, leading to differences in how the external and

At what age does 46,XY ovotesticular difference of sex development typically begin?

Typical onset of 46,XY ovotesticular difference of sex development is neonatal. Age of onset can vary across affected individuals.

Are there clinical trials for 46,XY ovotesticular difference of sex development?

Yes — 1 recruiting clinical trial is currently listed for 46,XY ovotesticular difference of sex development on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.