Sickle cell warriors are empowered to be part of the research and to be part of the solution, Regina Hartfield says.
In an interview with HCPLive, President and CEO of the Sickle Cell Disease Association of America (SCDAA) said the association's clinical trial finder will soon be accessible as a mobile app.
Currently, the trial finder can be used through the SCDAA website to help people with sickle cell disease (SCD) identify which clinical trials they're eligible for participating in. Trials can be particularly difficult to find for individuals with sickle cell disease; the SCDAA platform simplifies the process with its comprehensive database and guided search feature.
"We're very encouraged by the number of users that we have and the feedback that we're getting about the clinical trial finder," Hartfield said. "It's a one stop shop."
Hartfield also spoke about the difficulty that many individuals with sickle cell disease have when transitioning from pediatric care to adult care. Typically patients make this transition just before or during their teenage years.
"It's a very, very difficult and challenging transition point," she explained, "and we don't want to lose those living with sickle cell disease in their young age–early teens and 12 year olds–we don't want to do that. And we want to look at the opportunities we have to kind of bridge that gap and make the transition easier."
Throughout the interview, Hartfield emphasized the importance of listening to the "warriors' voice". Individuals living with the condition sometimes refer to themselves as "sickle cell warriors" because the complications they encounter with the disease can make each day feel like they're fighting a war.
Unfortunately, the emergency department (ED), where many warriors find themselves during a vaso-occlusive episode (VOC), or pain crisis, can often feel like a battleground. According to Hartfield, they're not always given the quality of care that they deserve, or that other patients receive.
Understanding the voice and experience of a warrior is imperative to addressing obstructive issues like these, in sickle cell care. The goal is to become aware and help to alleviate those issues.
SCDAA implemented the clinical trial finder to improve the ease of access to trials and also to encourage participation. Not only can a clinical trial have a positive impact on an individual, but the information provided by that individual's participation contributes to the clinical progress and therapeutic treatments, she said.
"With clinical trials–and having the participation of those who are living with sickle cell disease–they are empowered to be part of the research and to be part of the solution," Hartfield said.