International Severe Chronic Neutropenia Registry
Official title: Severe Chronic Neutropenia International Registry
Funded at Boston Children's Hospital · NIH-11146367 · Data updated 2026-11-12
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 start | August 25, 2022 |
| Project end | July 31, 2027 |
| Funding year | 2025 |
| Award (this year) | $1,031,877 |
| NIH project number | 5R24AI162637-04 |
| Project ID | NIH-11146367 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
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.
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.
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 gone: 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 Children's Hospital
Boston, United States Active
Researchers
- Principal investigator: Shimamura, Akiko — Boston Children's Hospital
- Study coordinator: Shimamura, Akiko
Related research
Other NIH-funded projects on the same topics.
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Severe Chronic Neutropenia Registry for Patients
A patient-facing registry that tracks severe chronic low neutrophil counts to improve understanding and care for people with this condition.
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Severe Chronic Neutropenia Registry to Improve Care
A patient-focused registry gathers information from adults with severe chronic neutropenia to better understand infections, treatments, and outcomes over time.
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Severe Chronic Neutropenia Registry: Finding Better Ways to Prevent Infections
A patient-focused registry at a leading hospital helps people with severe chronic neutropenia learn how the condition progresses and how treatments work over time.
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Stimulant that grows donor stem cells in the body to speed neutropenia recovery after chemotherapy and stem cell transplant
A drug given during or right before stem cell transplant helps donor stem cells multiply quickly inside the patient to shorten neutropenia after treatment.
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PointCheck: a home-based, non-invasive neutropenia monitor for chemotherapy patients
A portable, non-invasive device helps cancer patients on chemotherapy monitor neutropenia from home so doctors can prevent serious infections.
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.