Severe Chronic Neutropenia Registry for Patients
Official title: Severe Chronic Neutropenia International Registry
Funded at Boston Children's Hospital · NIH-11614272 · Data updated 2026-11-12
A patient-facing registry that tracks severe chronic low neutrophil counts to improve understanding and care for people with this condition.
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) | $62,072 |
| NIH project number | 3R24AI162637-05S3 |
| Project ID | NIH-11614272 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults with severe chronic neutropenia who can share medical history, treatment data, and relevant health information with the registry.
✕Less likely to help
Individuals without SCN or those unable to participate in data sharing may not directly benefit.
What this research studies
This project maintains a detailed registry of adults with severe chronic neutropenia to collect information about infections, treatments, and outcomes. Researchers will combine clinical data with new patient-reported information and advanced data analysis to identify patterns that can guide better management. The registry has a long history of contributing to clinical guidance and is expanding to use modern data tools and collaborations to discover new treatment approaches.
Why it matters
Potential benefit: If successful, the registry could lead to better prevention and treatment strategies for infections in people with SCN and more personalized care plans.
How similar studies have gone: Previous SCNIR activities have produced many publications and informed clinical care; this project aims to build on that history with enhanced data tools.
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 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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Stimulant to grow stem cells in the body to speed recovery after chemotherapy and stem cell transplant
A new drug given briefly before transplant aims to help patients recover their blood and immune system faster after chemotherapy or 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.