New Decision Tool Under Development to Aid Parents of Children with Rare Diseases

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Parents of children diagnosed with a rare disease are faced with many difficult decisions. One that may be particularly challenging is whether they should enroll their child in an available clinical trial, given uncertain potential benefits, harms, and outcomes. Researchers at RTI Health Solutions and our parent company RTI International will be launching a project to develop a decision tool that elicits parents’ benefit-risk preferences and helps them make informed choices about enrolling their children in clinical trials for pediatric indications.

This initiative will begin with the convening of a multi-stakeholder advisory board. “To provide a meaningful tool that can help parents think through the benefits and risks of participating in a clinical trial, we need to start by understanding what matters to them and the issues that come to mind for them when making such a complex decision,” explains Brett Hauber, PhD, VP of Health Preference Assessment at RTI-HS. “Parents making challenging trial decisions for their children, together with the clinicians who support them, benefit from opportunities to facilitate informed choices that are consistent with parents’ values and preferences,” adds Holly Peay, PhD, a senior public health analyst at RTI International.

Drs. Hauber and Peay will incorporate inputs from the advisory board to develop a tool designed to help parents make the best choice for their family regarding clinical trial participation while aiding clinicians with informed consent. This will be the first tool created specifically to utilize individual preferences to aid a shared decision-making process for participation in pediatric clinical trials. This initiative is funded by a grant from the Merck Investigator-Initiated Studies Program.

 

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