The Comprehensive PTEN Hamartoma Tumor Syndrome (PHTS) Multidisciplinary Clinic manages patients with PHTS, which includes a group of clinical disorders caused by changes in the PTEN gene. Our goal is to provide and coordinate comprehensive, multidisciplinary care.

These disorders are hereditary, and the risk of developing certain features associated with each disorder can be passed from generation to generation in a family.

Who we are

The PHTS Clinic is led by a group of specialists with expertise in multidisciplinary care for pediatric patients with PTEN hamartoma tumor syndrome. The team clinicians include specialists in oncology, complex vascular anomalies, genetics, endocrinology, gastroenterology, dermatology, neurology, immunology, developmental pediatrics, psychology and genetic counseling. An access coordinator, clinical research coordinator and program manager work with families to ensure all their needs are met regarding scheduling, insurance authorization, and the ability to participate in research studies.

What we do

The PHTS Clinic manages and coordinates treatment with multiple subspecialists for each individual patient, based on their specific needs. We work to ensure appropriate and comprehensive care management, including updated cancer surveillance guidelines. We:

• Provide detailed information about a patient’s specific diagnosis to families and answer any questions parents and other family members may have, including genetic counseling for family members;
• Coordinate surveillance testing and treatment provided by each specialist at CHOP in a comprehensive clinic setting;
• Send each patient’s local doctors a letter with detailed, patient-specific recommendations on managing the condition, including monitoring, testing and ongoing treatment and support;
• Facilitate connections to PHTS resources and advocacy groups;
• Provide access to psychosocial supports specific to the PHTS community.

If patients and families are interested, the PHTS Clinic serves as an access point for enrollment in PHTS-related clinical research.

Who we treat

The PHTS Clinic is available to any patient who has been diagnosed with PHTS who requires the care of two or more subspecialists. The clinic is open to patients whether or not they are already seen by a doctor within the CHOP system.

If you believe your child may benefit from the PHTS Clinic, please speak with your physician about a referral to the clinic, call 215-590-9399 or email us at cancerpredisposition@email.chop.edu.