Table 1.
Abbreviation | State | Definition |
---|---|---|
PS | Presymptomatic SCID | No overt signs of illness; the only medical encounters are for routine baby care. |
O | Outpatient | Two or more trips/month to either doctor’s office or emergency department because of illness related to SCID—infections, graft versus host diseases (GVHD), diarrhea, fail to thrive (FTT). |
I | Inpatient | Hospitalization for one or more nights per month for a medical condition related to SCID infections. |
H | HCT | A one-month period including preparation and administration of bone marrow. |
PH | Post-HCT | Inpatient SCID patient remains in the hospital. Hospitalization might be required for T cell lymphopenia, isolation, infection, GVHD, etc. |
Outpatient SCID patient is out of the hospital, but still needs one or more medical visits/month for tests and interventions. |
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SW | SCID Well | A post-BMT state in which a SCID patient is thriving but still receiving immunoglobulin to provide antibody protection. |
D | Decreased | Death |
UW | Unaffected Well | Child unaffected with SCID |
UD | Unaffected Death | Death of a child unaffected with SCID |