Registry for patients with systemic mastocytosis in China
Mastocvtosis Collaborative Network of China: A Registry for Patients With Systemic Mastocytosis
This study is collecting information from patients with systemic mastocytosis in China to better understand the disease and how it affects people.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 150 (estimated) |
| Sex | All |
| Sponsor | The First Affiliated Hospital of Soochow University Academic / other |
| Locations | 1 site (Suzhou, Jiangsu) |
| Trial ID | NCT06013683 on ClinicalTrials.gov |
What this trial studies
This registry aims to collect comprehensive demographic, socioeconomic, and clinical data from patients diagnosed with systemic mastocytosis (SM) across China. It will establish a nationwide database to better understand the epidemiological characteristics and distribution patterns of SM, which is currently under-researched in the region. The study will utilize a multicenter collaborative approach to register eligible patients and gather information on their clinical manifestations, laboratory tests, treatment regimens, and follow-up results. The data collected will undergo quality control and statistical analysis to enhance understanding of this rare disease.
Who should consider this trial
Good fit: Ideal candidates for this registry are patients diagnosed with systemic mastocytosis according to WHO classification who can provide informed consent.
Not a fit: Patients without a diagnosis of systemic mastocytosis or those unable to provide informed consent will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could significantly improve the understanding and management of systemic mastocytosis in China, leading to better patient outcomes.
How similar studies have performed: While there may be limited data on similar registries for systemic mastocytosis, observational studies in other rare diseases have shown success in improving understanding and treatment approaches.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Any patient with a diagnosis of systemic mastocytosis according to World Health Organization (WHO) classification, including subtypes of SM, who is willing and able to provide written online informed consent. Exclusion Criteria: None
Where this trial is running
Suzhou, Jiangsu
- The First Affiliated Hospital of Soochow University, Jiangsu Institute of Hematology — Suzhou, Jiangsu, China (Recruiting)
Study contacts
- Principal investigator: Suning Chen, Professor — The First Affiliated Hospital of Soochow University, Jiangsu Institute of Hematology
- Study coordinator: Suning Chen, Professor
- Email: chensuning@sina.com
- Phone: +86-13814881746
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.