CentennialX students eager to face the real world complications of rare diseases and clinical trials visited the PRA Health Sciences Headquarters to gain useful background on clinical trial research pertaining to rare disease and pediatrics. The PRA teams this summer in CentennialX are the Rare Disease teams from both William Tennent and Upper Dublin, and the Pediatric Research team. The teams were provided their own challenges to innovate and ideate to tackle their challenges against clinical trials. The Rare Disease teams are tasked to come up with a solution to forge better connections between patients, doctors, and researchers. The teams want to create something that will mend that gap and hopefully benefit the lives of those all around the world. The Pediatric Research Team is working on a solution in better educating pediatric patients about the assent process that takes place in a clinical trial. Most importantly, the team's desire to change the lives of those who are maligned by a complicated rare disease or a family that faces the burden of confusion.
“We’re definitely looking forward to having the chance to make a difference.” - Jake Miller, Pediatric Research Team
PRA Health Sciences, a partner of CentennialX, is a top five contract research organization, passionate about expediting drug discovery to provide communities around the world with life-changing medications, while also providing clinical research trials to patients in hopes of changing their lives and generations to come.
On July 5, 2017, the PRA Rare Disease teams and Pediatric Research team took to the real world and visited PRA Health Sciences for an informational meeting to get their inspiration flowing. The kids sat down with director Christina Fawcett of PRA and Mark Sorrentino, leader of the pediatric clinical research. Christina kicked off the meeting with a brief powerpoint highlighting the history of clinical trials, the phases involved, as well as the licenses and regulations that are required.
“I thought it was eye-opening to see that a lot of people are misinformed about clinical trials, especially adults.” -Abby Christofas, WTHS Rare Disease Team
Afterwards, PRA member Mark Sorrentino presented a video addressing the problems that children face when participating in clinical trials, and more importantly, making sure the children understand what they will be facing. The film evoked feelings of passion and drive as you viewed the PRA Pediatric staff’s strong emotions when they spoke about their desire to provide children with the care they deserve. The children portrayed in the video were unaware and confused as the PRA members inquired about clinical trials and what they imagined would take place. This is the problem that Mark Sorrentino and his team face when attempting to simplify the consent process for children in order for them to understand the conditions and treatments given to them in a clinical trial. This process for pediatrics is called assent. The problem was then given to our CentennialX Pediatric team in hopes of them creating a better solution in explaining the assent process.
“We want to educate them from a different perspective.” -Catherine Foy, Pediatric Research Team
Following the video, the students were put on a call with Scott Schliebner who is involved in the scientific affairs at PRA Health Sciences including Rare Diseases. Addressing the group, he informed the students about the complicated process of diagnosing rare diseases due to not acquiring many cases across the country. He explained that most rare diseases are caused by genetics, so their team is working to study the human genome in hopes of discovering new diseases. For the centennialX Rare Disease teams, they hope to create a product that successfully connects patients to doctors, or doctors to researchers, to essentially make finding treatment options more accessible.
Once the presentations were completed, questions were thrown all around the room, desperate for that reassuring answer. The immense thought and care the students had towards the clinical trials and the families involved was monumental. They were determined to grab every last detail to piece together their puzzle. Looking towards the future, it’s evident that these teams will create products that will change the world of science as we know it.