|Liza M. Johnson, MD, MPH, MSB|
1 United States site
> 13 Years
– 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.
– 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.