• Thu. Dec 1st, 2022

SCDAA Launches SCD Clinical Trial Search Mobile App

ByCindy J. Daddario

May 18, 2022

In an interview with HCP Livepresident and CEO of the Sickle Cell Disease Association of America (SCDAA), said the association’s clinical trial search tool will soon be available as a mobile app.

Currently, the trial search tool can be used through the SCDAA website to help people with sickle cell disease identify clinical trials in which they can participate. Trials can be particularly difficult to find for people with sickle cell disease; the SCDAA platform simplifies the process with its comprehensive database and guided search function.

“We are very encouraged by the number of users we have and the feedback we are getting on the clinical trials search tool,” Hartfield said. “It’s a one-stop shop.”

The voice of sickle cell warriors

Hartfield also spoke about the difficulty many people with sickle cell disease face when transitioning from pediatric 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 who are living with sickle cell disease at a young age – young teenagers and 12-year-olds. – we don’t want to do And we want to look at the opportunities available to us to bridge this gap and ease the transition.

Throughout the interview, Hartfield emphasized the importance of listening to the “voice of the warriors.” People living with the disease sometimes refer to themselves as “sickle cell warriors” because the complications they face with the disease can make every day feel like they are fighting a war.

Unfortunately, the emergency department (ED), where many warriors end up during a vaso-occlusive episode (VOC) or pain attack, can often feel like a battlefield. According to Hartfield, they don’t always receive the quality of care they deserve or that other patients receive.

Understanding the voice and experience of a warrior is imperative to solving obstructive issues like these in sickle cell care. The goal is to raise awareness and help alleviate these problems.

The SCDAA has set up the clinical trials search tool to facilitate 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 clinical progress and therapeutic treatments, she said.

“With clinical trials — and the participation of those living with sickle cell disease — they are empowered to be part of the research and part of the solution,” Hartfield said.