Severe Chronic Neutropenia Registry to Improve Care
Official title: Severe Chronic Neutropenia International Registry
Funded at Boston Children's Hospital · NIH-11614271 · Data updated 2026-11-12
A patient-focused registry gathers information from adults with severe chronic neutropenia to better understand infections, treatments, and outcomes over time.
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 | 2026 |
| Award (this year) | $8,276 |
| NIH project number | 3R24AI162637-05S2 |
| Project ID | NIH-11614271 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults with severe chronic neutropenia (congenital or acquired) who have or are receiving care for neutropenia.
✕Less likely to help
The registry may be less directly beneficial for individuals without SCN or those not engaged with clinical care.
What this research studies
If you have severe chronic neutropenia, this registry collects data about infections, treatments like G-CSF, and health outcomes to map the disease’s natural history. Researchers use this information to identify patterns and improve guidance for care. The project builds on years of data and collaborations to integrate new scientific advances with clinical practice so that patients receive more informed, personalized care. Participation involves contributing medical history and outcomes over time, with privacy protections in place. The registry aims to translate findings into better treatments and management strategies for SCN.
Why it matters
Potential benefit: If successful, patients could receive more precise care and updated guidelines based on real-world data.
How similar studies have gone: A large body of prior SCN research using registry data has informed care and generated many publications, indicating value in continued data collection.
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: 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
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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.
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Understanding how DARC/ACKR1 genetic differences affect white blood cell counts in African Americans
A study explores how a common genetic variant tied to DARC/ACKR1 affects white blood cell and neutrophil counts in African American people, to help clinicians interpret these tests more accurately.
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.