The decision to participate in clinical trials for Sickle Cell Disease (SCD) involves considerations that may impact individual routines and health, and by consequence, influence aspects of a trial, like recruitment and adequate completion of the study. Understanding the barriers and motivators to participation among people with SCD (PwSCD) is crucial for the success of clinical trials, ultimately enhancing health outcomes. The Learnings and Insights into Sickle Cell Trial Experiences (LISTEN) Survey was developed to provide a comprehensive understanding of the barriers and motivators to participation in clinical trials for PwSCD as well as health care professionals (HCPs) involved in their care. The survey collected responses from individuals from 17 different countries. The LISTEN Survey is a real-word data study that was funded by Novo Nordisk Health Care AG and designed with input from Global SCD HCPs as well as PAG representatives and individuals living with SCD, and performed by Madano (London, UK).

This study presents findings from the LISTEN Survey, focusing on the Brazilian subsample. The focus of this work is to describe and compare perspectives of people with SCD and their HCPs on barriers and motivations to participate in clinical trials. Methods: Between October 6, 2022, and June 22, 2023, 82 PwSCD and 36 HCPs from Brazil completed quantitative surveys, rating the importance of various factors influencing their decision to participate in clinical trials. Answers were measured by a 7-point scale, that ranged from “not important at all” to “extremely important”, which the participants chose from to classify each topic. The surveys covered impact on daily life, trial treatment impact, and wider clinical trial outcomes.

The survey revealed that individuals with SCD prioritize factors such as increased access to specialist care and the potential for improved symptom management when considering trial participation. Conversely, HCPs placed high importance on issues like travel requirements and potential work or income disruption. Both groups valued supporting new treatments but differed notably on knowledge enhancement and data access.

The results indicate that PwSCD are motivated to participate in trials to improve their future and the lives of others with SCD. They seek symptom amelioration and closer monitoring by specialists. However, disparities were observed between patient and HCP perspectives, particularly regarding the impact on daily life. Their concerns about disrupting routines were less pronounced than perceived by HCPs, indicating willingness to participate.

Insights from the LISTEN Survey offer valuable understanding of participation motivators and barriers for individuals with SCD, informing strategies to enhance trial completion and potentially improve health outcomes in SCD.