|Liza M. Johnson, MD, MPH, MSB|
1 United States site
> 13 Years
HbSS, HbS/ β0thalassemia, HbSC
Parent of child with HbSS, HbS/ β0thalassemia, or HbSC aged 12 months to 18 years at study initiation, irrespective of clinical severity or patient aged 13-18 with aforementioned SCD genotype.
Informed consent from parent or legal guardian and assent of adolescent participant.
Has been previously approached for SCRIPP.
Participants who are unable to converse fluently in English will be excluded. (Permanent)
Condition or chronic illness, which in the opinion of the PI/Co-I, makes participation unsafe or untenable (i.e. cognitive impairment, concurrent acute morbidity). Participant may be re-evaluated.
Inability or unwillingness of research participant or legal guardian/representative to give written informed consent.