Severe Chronic Neutropenia International Registry (SCNIR)
The Severe Chronic Neutropenia International Registry (SCNIR or Registry) is a global organization dedicated to finding the causes, consequences, and best treatments for severe chronic neutropenia (SCN).
The SCNIR opened in 1994 after researchers discovered that the hematopoietic growth factor called granulocyte colony-stimulating factor (G-CSF) is an effective treatment for SCN.
Check out their website for more information as well as the resources below.
SCNIR Virtual Family Day 2024 – Recordings Now Available!
Did you miss the SCNIR Virtual Family Day 2024? The recordings from the event are now available on the SCNIR website!
These educational recordings provide valuable information for patients, families, and healthcare professionals about neutropenia and the Severe Chronic Neutropenia International Registry (SCNIR).
Please visit https://www.scnir.org/familydayrecordings to view these recordings.
Patient-Reported Outcomes
Participants in the SCNIR are invited to join an SCNIR study of patient-reported outcomes for neutropenia. By hearing directly from patients and families, rather than an interpretation of a patient’s condition by a medical provider, the SCNIR aims to better understand the patient and family experience of neutropenia and its associated treatments. Our goal is to foster the partnerships between patients and medical providers for shared medical decisions that align with patient and caregiver values and preferences.
Participants will receive an email with a link to the survey for this study. The average time to complete the survey is 30 minutes.
If you have not received a link for the study and are part of the registry, please reach out to the SCNIR team at the info below. If you are not already in the SCNIR and would like to participate, please contact us and let your voice be heard!
Email: [email protected]
Phone: 617-730-4679