Understanding the characteristics of Chinese patients with Neurofibromatosis type 1
A Retrospective Study on Epidemiological Characteristics of Chinese NF1 Patients in Real World (PROMISE)
This study looks at Chinese patients with Neurofibromatosis type 1 to see how common certain tumors are and how they are treated.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 2000 (estimated) |
| Sex | All |
| Sponsor | Shanghai Ninth People's Hospital Affiliated to Shanghai Jiao Tong University Academic / other |
| Locations | 5 sites (Beijing, Beijing and 4 other locations) |
| Trial ID | NCT06379230 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather and analyze epidemiological data on Chinese patients diagnosed with Neurofibromatosis type 1 (NF1) and the prevalence of plexiform neurofibromas (PN). By reviewing patient records from multiple hospitals, the study seeks to determine the percentage of NF1 patients who develop PN and to understand the treatment patterns among this population. The study does not involve any interventions and is purely descriptive in nature, focusing on real-world data collected from patients who attended the participating hospitals between 2019 and 2022.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with Neurofibromatosis type 1 who attended the participating hospitals during the specified time frame.
Not a fit: Patients with NF1 who also have other malignant tumors will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the epidemiology and treatment patterns of NF1 in Chinese patients, potentially guiding future clinical practices.
How similar studies have performed: While there is limited data on similar studies specifically focused on Chinese NF1 patients, the approach of gathering epidemiological data has been successful in other populations.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Beijing, Beijing and 4 other locations
- Xuanwu Hospital, Capital Medical University — Beijing, Beijing, China (Recruiting)
- The First Affiliated Hospital of Guangxi Medical University — Nanning, Guangxi, China (Recruiting)
- The First Affiliated Hospital of Zhengzhou University — Zhengzhou, Henan, China (Recruiting)
- Shanghai Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine — Shanghai, Shanghai, China (Active_not_recruiting)
- West China Hospital, Sichuan University — Chengdu, Sichuan, China (Recruiting)
Study contacts
- Study coordinator: Zhichao Wang
- Email: shmuwzc@163.com
- Phone: +86 13816382311
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.