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
    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.