Table 1.

Sickle cell disease research and scientific panel core tier 1 measures

MeasureProtocol age rangeProtocol 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 
MeasureProtocol age rangeProtocol 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.

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