Overview

RAD001 and Neurocognition in PTEN Hamartoma Tumor Syndrome

Status:
Active, not recruiting
Trial end date:
2021-12-01
Target enrollment:
Participant gender:
Summary
Phosphatase and TENsin homolog (PTEN) gene germline mutations are associated with a spectrum of clinical manifestations characterized by neurocognitive deficits, intellectual disability, autism symptomatology, skin lesions, macrocephaly, hamartomatous overgrowth of tissues, and an increased risk of cancers. Investigators are conducting research to evaluate the potential safety and efficacy of RAD001 (everolimus) in this patient population, and the potential neurocognitive benefits from treatment with RAD001 or placebo for a six month period. The investigators hope this trial will lead to a better understanding of PTEN and to new forms of treatment that may benefit children and adults with PTEN in the future.
Phase:
Phase 1/Phase 2
Details
Lead Sponsor:
Boston Children's Hospital
Boston Children’s Hospital
Collaborators:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Center for Advancing Translational Science (NCATS)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
Novartis Pharmaceuticals
Office of Rare Diseases (ORD)
PTEN Research
PTEN Research Foundation
Treatments:
Everolimus
Sirolimus