What will happen in the study?
As a participant in the Registry, you will have regular medical checkups and tests (blood counts) as prescribed and directed by your physicians. For the Registry, you may be asked to maintain a calendar to record treatments you receive for neutropenia if you are ill or hospitalized. Maintenance of the calendar is voluntary.
To be in the Registry, you and your physician are required to release information regarding your medical history and medical tests to the Registry office at the University of Washington, Seattle, Washington. The Registry requests bone marrow slides that have been done as part of your regular care be sent with the registration information if your health changes significantly. As a participant in the Registry, your doctor will be asked to complete standard forms when you are enrolled and about once a year thereafter for as long as you remain in the Registry. This information will include:
- birth date
- referring doctor
- medical history
- medical history of infections and related medical problems
- growth and development markers (for children, e.g., height, weight, milestones of physical and sexual development)
- record of treatments for neutropenia.
Every year that you remain in the Registry, we will ask your physician about your current health status, blood counts, bone marrow tests (if done), and infections or serious illnesses.