Table 1.
Sickle cell disease research and scientific panel core tier 1 measures
| Measure | Protocol age range | Protocol source; reference no. |
|---|---|---|
| 1. Current age | All ages | National Health and Nutrition Examination |
| 2. Ethnicity | All ages | National Health and Nutrition Examination |
| 3. Sex | All ages | California Health Interview Survey |
| 4. Race | All ages | National Health and Nutrition Examination |
| 5. Height | Birth to 47 mo | National Health and Nutrition Examination |
| 2 y and older | National Health and Nutrition Examination | |
| 16 y and older | National Health and Nutrition Examination | |
| 60 y and older | National Health and Nutrition Examination | |
| 6. Weight | All ages | National Health and Nutrition Examination |
| All ages | National Health and Nutrition Examination | |
| 7. Complete blood count | All ages | National Health and Nutrition Examination |
| 8. Pulse oximetry (rest) | All ages | 31 |
| 9. Frequency of Sickle Cell Pain Episodes Per Year* | 18 y and older | Cooperative Study of Sickle Cell Disease |
| 10. History of transfusion* | 18 y and older | Duke-UNC-Emory Genes Study |
| 11. Hemoglobin characterization* | All ages | The Laboratory Diagnosis of Haemoglobinopathies |
| Sickle cell disease case definitions (SI) | Newborn children | Newborn Screening Technical Assistance and Evaluation Program |
UNC, University of North Carolina at Chapel Hill.
*
New measures added by SRSP.