Sickle Cell Disease Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
Group 1 – Survey and Interview:
- Parents of a child (aged 12 months to 18 years) who has been diagnosed with a specific type of sickle cell disease (HbSS, HbS/β0 thalassemia, or HbSC), regardless of how severe the condition is, or patients aged 13–18 with one of these diagnoses
- Participants who have previously been approached about a study called SCRIPP
- Written agreement to take part must be provided by a parent or legal guardian, and teenagers must also give their own agreement
Group 2 – Focus Group:
- Adult patients with, or parents of a child (aged 12 months to 18 years) with, a specific type of sickle cell disease (HbSS, HbS/β0 thalassemia, β+ thalassemia, or HbSC), regardless of how severe the condition is, or patients aged 16–18 with one of these diagnoses
- Written agreement to take part must be provided by a parent or legal guardian, and teenagers must also give their own agreement
Group 3 – Usability and Pilot Testing:
- Parents of a child (aged 12 months to 18 years) with a specific type of sickle cell disease (HbSS, HbS/β0 thalassemia, β+ thalassemia, or HbSC), regardless of how severe the condition is, or patients aged 13 and older with one of these diagnoses
- Written agreement to take part must be provided by a parent or legal guardian, and teenagers must also give their own agreement
Who may not be able to join:
- People who are not able to hold a fluent conversation in English
- People whose overall health condition or a long-term illness makes participation unsafe or not practical — for example, a significant cognitive impairment or a serious illness happening at the same time (the trial team may reassess this at a later point)
- People who are unwilling or unable to provide written consent to participate, and cases where a parent or legal guardian is unwilling or unable to provide that consent on behalf of a child
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Principal Investigator: Liza M. Johnson, MD, MPH, MSB, St. Jude Children's Research Hospital
Phone: 888-226-4343
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Use of semi-structured interviews in parents of SCD patients to qualitatively describe parental attitudes of research involving genomic sequencing, including concerns about participation and expectations from researchers; Use of surveys to quantitatively measure genetic/genomic knowledge, trust in health care provider/researchers, and literacy/numeracy ability in parents of children with SCD and adolescents with SCD.
Can't join this trial?
Data last synced from ClinicalTrials.gov: 27 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.