Telemedicine for Children With Sickle Cell Disease

Launched by INDIANA UNIVERSITY · Oct 8, 2021

Keywords

ClinConnect Summary

This clinical trial is investigating how two different types of telemedicine can help children with Sickle Cell Disease (SCD) get better care. Telemedicine is a way for patients to receive medical consultations and treatments remotely, without needing to visit a doctor's office in person. The study aims to adapt these telemedicine methods based on feedback from families, test how well they work in real-life situations, and see if they improve the overall care experience for both patients and their caregivers.

To participate in this trial, caregivers must be at least 18 years old and have children aged 0 to 21 who are diagnosed with Sickle Cell Disease and are patients at the Riley Hospital for Children. Families will need to be open to receiving care through the telemedicine options available to them, depending on where they live. Participants can expect to be involved in interviews and surveys that will help researchers understand how effective these telemedicine models are in providing care. It's important to note that children who are receiving chronic blood transfusion therapy are not eligible for this study.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Caregivers must be 18 years or older, who have children between 0 to 21 years old with a diagnosis of Sickle Cell Disease and receive care at the Riley Hospital for Children Comprehensive Sickle Cell Disease clinic.
• • Adolescent patients 16 years and older are also able to participate in interviews/surveys.
• • The family must be willing to receive their care using the telemedicine model available to them based on the location of their primary residence.
• • TeleSCD model participants must live within 1 hour of the pre-identified telemedicine sites, while VirtualSCD model participants must live within the city limits of the pre-identified area.
• Exclusion Criteria:
• • If a patient receives chronic transfusion therapy, they will not be eligible to participate, as our telemedicine models will not support this.