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RECRUITINGINTERVENTIONAL

SMYLS Multi-site Trial

Self-Management for Youth Living With Sickle Cell Disease: SMYLS Multi-site Trial

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

The purpose of this study is to find out whether a web-based intervention using a mobile app is helpful for teens and young adults with sickle cell disease (SCD) in learning how to care for and manage their symptoms.

Who May Be Eligible (Plain English)

Who May Qualify: - documentation in the electronic health record of any type of SCD - owns mobile device compatible with the intervention - access to the internet Who Should NOT Join This Trial: - Plans to relocate outside of study site area in the next 12 months - Plans to transition to adult care in 12 months or less - Parent/caregiver or provider report of neurocognitive impairment that precludes ability to use intervention and participate in study - non-English speaking Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
Inclusion Criteria: * documentation in the electronic health record of any type of SCD * owns mobile device compatible with the intervention * access to the internet Exclusion Criteria: * Plans to relocate outside of study site area in the next 12 months * Plans to transition to adult care in 12 months or less * Parent/caregiver or provider report of neurocognitive impairment that precludes ability to use intervention and participate in study * non-English speaking

Treatments Being Tested

BEHAVIORAL

Voice Crisis Alert V2

The mHealth self-management intervention consists of the following components: 1) condition-specific electronic educational materials; 2) pain/symptom monitoring and tracking; 3) health history information documentation; 4) medication tracking; 5) secure messaging with a provider; 6) functioning monitoring and tracking; and 7) transmission of health information (graphs with recorded pain and functioning histories) to a provider.

BEHAVIORAL

Electronic educational materials

The control arm will receive enhanced usual care, which will consist of usual educational materials distributed at the clinic plus a version of the intervention (Voice Crisis Alert V2) that only includes the electronic educational materials.

Locations (1)

Medical University of South Carolina
Charleston, South Carolina, United States