Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders

About the study

The primary objectives of this prospective mixed-method interview study are to use semi-structured interviews in parents of sickle cell disease (SCD) patients to describe parental attitudes of research involving genomic sequencing, including concerns about participation and expectations from researchers and to use surveys to quantitatively measure genetic/genomic knowledge, trust in health care provider, and literacy/numeracy ability in parents of children with SCD and adolescents with SCD.

Investigators hope to use the results of the planned surveys and interviews to reduce the risk of misunderstanding about DNA and genetic research and build strong relationships between SCD families and researchers in the future, and to design educational information and study materials that will help parents with children with SCD understand important details about DNA and genetic research.

Study point of contact

Liza M. Johnson, MD, MPH, MSB
866-278-5833
[email protected]

Locations

1 United States site

Age

> 13 Years

Genotypes

HbSS, HbS/ β0thalassemia, HbSC

Study type

Observational

Gender

All

participation requirements

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.

participation restrictions

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.

Locations

  • Memphis, Tennessee, United States, St. Jude Children's Research Hospital
Last updated 2022-04-04