A Retrospective Study on Epidemiological Characteristics of Chinese NF1 Patients in Real World (PROMISE)

Launched by SHANGHAI NINTH PEOPLE'S HOSPITAL AFFILIATED TO SHANGHAI JIAO TONG UNIVERSITY · Apr 18, 2024

Keywords

ClinConnect Summary

This clinical trial, titled PROMISE, is looking into the characteristics and treatment of patients with Neurofibromatosis type 1 (NF1) in China, particularly those who develop a specific type of tumor called plexiform neurofibromas (PN). NF1 is a genetic condition that affects around 1 in every 3,000 people, and many patients experience complications that can impact their daily lives. The study aims to determine how many NF1 patients develop these tumors, describe their symptoms, treatment options, and gather information about other NF1-related health issues.

To participate in this study, patients must have been diagnosed with NF1 between January 1, 2019, and December 31, 2022, and be receiving care at one of the participating medical centers. Unfortunately, those with other types of cancer are not eligible. By reviewing medical records, the researchers hope to collect valuable data that could improve understanding and treatment of NF1 in the future. Participants can expect their past medical information to be used to help shed light on this condition, contributing to a better understanding of NF1 and its impact on patients' lives.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 1. Patients who attended the study sites between January 1, 2019, and December 31, 2022.
• • 2. Patients who were diagnosed with NF1(recorded with the text of type I neurofibromatosis) based on National Institutes of Health (NIH) NF1 consensus.
• Exclusion Criteria:
• • 1. Patients combined with other malignant tumors