A registry for understanding severe chronic neutropenia and its treatments
Severe Chronic Neutropenia International Registry
This study is all about helping people with severe chronic neutropenia (SCN) by gathering information from patients to learn more about the condition and find better treatments, so your experiences can make a difference in future care.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston Children's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project ID | NIH-10897770 on NIH RePORTER |
What this research studies
This research focuses on severe chronic neutropenia (SCN), a condition that significantly increases the risk of life-threatening infections due to low levels of neutrophils, a type of white blood cell. The Severe Chronic Neutropenia International Registry (SCNIR) collects and analyzes data from patients with SCN to better understand the disease's natural history, treatment responses, and long-term outcomes. By leveraging advancements in database science and molecular biology, the research aims to discover new treatments and improve medical management for those affected by SCN. Patients can contribute their experiences and outcomes, which will help shape future therapies and clinical guidelines.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals diagnosed with severe chronic neutropenia, regardless of whether their condition is congenital or acquired.
Not a fit: Patients without a diagnosis of severe chronic neutropenia or those who do not experience significant infections related to neutropenia may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved treatment options and better management strategies for patients with severe chronic neutropenia.
How similar studies have performed: Previous research utilizing registries and collaborative data collection has shown success in advancing understanding and treatment of similar immunodeficiencies.
Where this research is happening
Boston, United States
- Boston Children's Hospital — Boston, United States (Active)
Researchers
- Principal investigator: Shimamura, Akiko — Boston Children's Hospital
- Study coordinator: Shimamura, Akiko
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.