How to Enroll Your Patient

Steps

1. Consent
  - Schedule an appointment for the patient/parents to sign the consent form.
  - Fax a copy of the consent form to the registry.
2. Registration
  - Submit Screening Checklist. (Checklist will be reviewed)
  - Registration Form and Laboratory Evaluations.
  - Mail or fax is okay.
3. Approval / Denial
  - Registration process takes 4-6 weeks. Once approved/denied, the Registry will inform you of the enrollment status.

What Labs to Submit With Registration Form

- Hematology
  - Three or more Complete Blood Counts with Absolute Neutrophil Count less than 0.500 x 10⁹/L within 3 months before initial dose of G-CSF. If cyclic neutropenia, then provide a series of blood counts, such as 3 times per week for 6 weeks.
- Pathology
  - Bone Marrow and Cytogenetic evaluations done prior to enrollment. This includes 1-stained and 1-unstained bone marrow slide if available.
- Radiology
  - Bone density evaluation if available.
- Genetics Evaluations
  - Genetics testing if done: common tests are ELANE, HAX1, TAZ, COH1, SBDS, GSD Ib, CXCR4.
- Antibody Evaluations
  - Autoimmune testing if available: common names for tests are Anti-Neutrophil Antibodies, Granulocyte Antibodies and ANA.