International Severe Chronic Neutropenia Registry
Severe Chronic Neutropenia International Registry
A global database that collects health and treatment information from people with severe chronic neutropenia to help improve care and outcomes.
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-11146367 on NIH RePORTER |
What this research studies
I would join a global registry that collects my medical history, lab results, treatment details (such as G-CSF use), and any genetic testing related to severe chronic neutropenia. The project links these clinical records with patient questionnaires and, when available, biological samples so researchers can study how infections, treatments, and complications change over time. Researchers apply modern molecular, computational, and database methods to look for patterns, risks, and potential new treatment targets. De-identified data are shared with approved investigators worldwide to help develop care guidelines and new therapies.
Who could benefit from this research
Good fit: Adults with severe chronic neutropenia (congenital or acquired), including people treated with G-CSF, who can share medical records and complete questionnaires are ideal candidates.
Not a fit: People without SCN, those with temporary or mild neutropenia that does not meet registry criteria, or those unwilling to share medical information are unlikely to benefit directly.
Why it matters
Potential benefit: Could lead to better treatment guidelines, identification of new therapy targets, and reduced serious infections for people with SCN.
How similar studies have performed: This registry has been active since 1994 and has supported over 250 publications and clinical guidance, so its data-sharing approach has a strong track record.
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.