National Evaluation of Patients With PIK3CA-Related Overgrowth Spectrum (PROS)

Launched by INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE, FRANCE · Sep 28, 2022

Keywords

ClinConnect Summary

This clinical trial, called the National Evaluation of Patients With PIK3CA-Related Overgrowth Spectrum (PROS), is focused on understanding rare genetic disorders known as overgrowth syndromes. These conditions, which include CLOVES Syndrome and Klippel Trenaunay Syndrome, cause certain parts of the body to grow larger than normal due to changes in specific genes. The goal of this study is to create the first national registry in France to better understand how common these syndromes are and to gather important information about them.

To participate in this trial, individuals must be connected to the French healthcare system and have a clinical diagnosis of an overgrowth syndrome. Both children and adults can join, but they need to provide written consent—adults can consent for themselves, while parents must consent for their children. Participants can expect to contribute to valuable research that may help improve the understanding and treatment of these conditions in the future. It’s important to note that individuals under judicial safeguards or who cannot give informed consent are not eligible to participate.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Affiliated to the French healthcare insurance system.
• • 2. Pediatric and adult patients
• • 3. Clinical diagnosis of overgrowth syndrome
• • 4. Written informed consent from adult patients and from both parents of pediatric patients.
• Exclusion Criteria:
• • 1. Person subject to a judicial safeguard measure
• • 2. Inability to give informed consent