LeAnn joined PRA in October 2018 as a Senior Project Manager, working primarily on oncology clinical trials. We sat down with her to hear her personal story about why she entered into oncology clinical research and to get her thoughts on the RACE for Children Act.
Tell us about your role and responsibilities here at PRA?
I joined PRA in October 2018 as a Senior Project Manager, working primarily on oncology clinical trials.
You have a strong commitment to oncology, specifically pediatric oncology. Can you share your story as to why?
In 2008, my youngest son was diagnosed with a brain tumor called medulloblastoma. At the time, I knew nothing about the field of cancer, drug trials, etc. However, sitting in a hospital room with a very sick child for hours upon hours and days upon days sent my brain on overdrive to find out everything I could about not only his disease but childhood cancer as a whole.
Tell us what you do to make sure pediatric oncology is at the forefront of legislation?
In my quest to learn as much as I could about childhood cancer, I became shocked, and quite honestly angry, at some of the facts from the childhood cancer community. I learned more children are lost in the US to cancer than any other disease, that 1 in 5 children diagnosed with cancer will not survive, that the average life years lost to cancer is around 70, and for those who do survive, they are left with many lifelong issues as a result of their treatments at such an early age. And even more shocking was that only a handful of drugs had ever been developed specifically for the treatment of childhood cancer (something that has minimally improved with the Creating Hope Act). So, I got involved. I became actively involved with the Pediatric Brain Tumor Consortium, a group of institutions in the US supported by NCI to treat children with brain tumors. I also became actively involved with organization like St. Baldrick’s and Duke University’s Angels Among Us, raising money for improved research. I also joined the board of the Children’s Cancer Cause, a non-profit advocacy organization in Washington D.C. working to achieve more effective pediatric cancer therapies and address unique challenges for childhood cancer patients, survivors, and their families.
What thoughts do you have on the RACE Act?
I am hopeful that the RACE Act will bring about new therapeutic options for children battling cancer. While many strides have been made in childhood leukemia over the past several decades, there are many childhood cancers where the mortality rate remains quite high. And a few, such as Diffuse Intrinsic Pontine Gliomas (DIPGs) that remain terminal upon diagnosis. However, the number of newly diagnosed cases of childhood cancer remains quite small when compared to that of adults which does bring about a concern that RACE could potentially bring more trials than patients.
PRA is committed to being a CRO at the forefront of the RACE Act. Any recommendations to the RACE-R team as we prepare for the RACE Act to go in to effect August 18, 2020?
I am extremely proud to work for a company that is taking a proactive approach to the RACE Act. It is apparent that much effort has been made by the PRA RACE-R team to dive in to this new legislation and be prepared for August 2020. I do believe that many sponsors are anxious and still trying to understand the implications of what RACE will mean for their organizations. While PRA has an active Pediatric Collaboration Team, there are many PMs, PDs and DPDs that interact with sponsors on a regular basis that may receive questions regarding RACE. We should ensure there is a landing spot for project teams to receive information that could be helpful in communicating with our clients. Additionally, the RACE-R team should engage in forums/activities with the childhood cancer advocacy community to be able to fully understand not only our clients questions/needs but also the voice of the patient and their families.
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