Table 2.

Specimen collection: blood work and procedures.

Labs and procedures	Enrollment	Annual
Biorepositorya	✓	N/Ab
C-reactive protein	✓	N/A
Fibrinogen	✓	N/A
Troponin-I	✓	N/A
Brain natriuretic peptide (BNP)	✓	N/A
Immunoglobulin G (IgG)	✓	N/A
Fasting blood glucose	✓	✓
Glucose fructosamine	✓	✓
Insulin level	✓	✓
Urinalysis	✓	✓
Urine for microalbuminuria	✓	✓
Complete blood count with differential	✓	✓
Urine creatinine	✓	✓
Lipoprotein, serum lipids after 12 h fast	✓	✓
Immunophenotype of T, B, and natural killer (NK) cells	✓	N/A
Pneumococcal-23 serotype IgG	✓	N/A
D-dimer	✓	N/A
FSHc (≥11 years old)	✓	✓
LHd (≥11 years old)	✓	✓
AMHe (females ≥11 years old)	✓	✓
Testosterone (males ≥11 years old)	✓	✓
Estradiol (females ≥11 years old)	✓	✓
Blood urea nitrogen (BUN)	✓	✓
Creatinine	✓	✓
Thyroid panel	✓	✓
Lactate dehydrogenase (LDH)	✓	N/A
Hemoglobin electrophoresis	✓	✓
Chimerism study (HCTf patients only; fluorescent in situ hybridization [FISH] or variable number of tandem repeats [VNTR]; not paid for by study funds)	✓	✓
Semen analysis (males enrolled in reproductive health aim)	✓	N/A
Antral follicle count by vaginal ultrasound (females enrolled in the reproductive health aim	✓	N/A
Height/weightg	✓	✓
Hip/waist circumferenceg	✓	✓
Handgriph	✓	N/A
TUGh,i	✓	N/A
Pain diaryj	✓	N/A
Surveysk	✓	✓

^aBiorepository specimen tests include testing of soluble urokinase plasminogen activator receptor (suPAR) and metabolomics to identify untargeted and global small-molecule metabolites, functional opsonophagocytic activity, and splenic function assay with flow cytometric enumeration of Howell-Jolly micronuclei. The biorepository specimens will be shipped to the Children’s Healthcare of Atlanta lab.

^bN/A: not applicable.

^cFSH: follicle-stimulating hormone.

^dLH: luteinizing hormone.

^eAMH: anti-Mullerian hormone.

^fHCT: hematopoietic cell transplantation.

^gAll participants will complete height/weight and hip/waist circumference measurements.

^hTUG: timed up and go.

ⁱParticipants ≥4 years old will complete handgrip and TUG testing.

^jThe pain diary will only be used over a 2-week period for individuals ≥8 years old who underwent HCT or autologous GT^l or have SCD^m. Please see the Pain Diary section for additional details.

^kRefer to Textbox 1 and Table 1 surveys for additional information.

^lGT: gene therapy.

^mSCD: sickle cell disease.