The overarching goal of this project is to develop and implement a web based decision aid individualized to patient characteristics to help patients with SCD achieve more accurate perception of risks and benefits of treatment options and make decisions in congruence with their values and preferences.

The investigators will conduct needs assessment interviews as indicated by the data for saturation and validation of findings. The investigators will conduct beta testing of the web-based decision aid to clarify development and validate findings. The investigators will use a randomized controlled trial of the effectiveness of a web-based decision aid to give patients accurate information about risks and benefits of therapies and enable them to make decisions based on their individual values and preferences. To provide accurate information to patients and caregivers about the risks and benefits of various treatments for sickle cell disease and to enable them to make informed and involved therapeutic decisions based on their values, preferences and stated goals.

More information: clinicaltrials.gov, ITHANET Clinical Trials