UNICEF’s World’s Children Day is celebrated each year on November 20th to “promote international togetherness, awareness among children worldwide, and improve children's welfare.” This day is an opportunity that invites everyone – governments and community leaders, healthcare professionals, educational institutions, religious leaders, the media, the corporate world, and individual citizens around the globe – to collectively advocate, promote, and celebrate children's rights.
World Children’s Day at PRA Health Sciences recognizes children’s rights to safe and effective treatments. This year, the teams from PRA’s Center for Pediatric Clinical Development and the Center for Vaccine Research, together with keynote speakers from across the US and guests, came together in Blue Bell, PA to discuss and support the rights of children around the world. Our speakers from JUMO Health, UNICEF, LSU, CISCRP, iCAN, and SPROUTEL all contributed their experienced and varied insight into how they make a difference for children facing medical diagnoses and participating in clinical trials.
During this celebration, I was introduced to two amazing young women who were featured speakers in our event, Nicole and Melanie Mendez-Villarrubia, who, along with their mother Josie, all suffer from Marfan Syndrome – a genetic disorder of the connective tissue. In addition to battling this debilitating disease, these three courageous women have become vocal advocates for the rights of young patients. They continually fight for their perspective to be heard and their concerns to be addressed throughout the clinical trial process.
The clinical research industry has come to learn that, ironically, the patient experience can sometimes exclude the patient. Pediatric patients in particular can often feel that they are not engaged or even active participants throughout a clinical trial. With an intimate, firsthand understanding of how the patient experience impacts a child, Nicole and Melanie shared their story with us at World Children’s Day.
Nicole, the older of the two sisters, spoke eloquently on the need for more opportunities for young patients to provide real input and feedback on what they’re feeling and experiencing during a clinical trial. For her, trusting and feeling comfortable with the research staff are integral in making the experience positive for the patient and the clinical trial successful. Further, honest communication – just doing a better job talking and listening to kids – is critical. Researchers must ensure young patients are engaged throughout the clinical trial, beginning as early as trial design.
For Melanie, a major concern is ensuring the studies are more understandable and relatable for the patient. She felt that many of her clinical trial questions were met with explanations containing medical jargon and language too complex for her to understand. She expressed that she rarely fully grasped what was going on, and that children want and deserve to know about the trail in which they are participating.
Both young women agreed that they were eager to help improve and optimize pediatric clinical trials, which could not only be life-changing for themselves, but also for others who suffer from serious illnesses. This selflessness is clearly a testament to their mother’s longtime efforts as a champion for patient rights and her deep-seeded need to help others. She has encouraged her daughters to get out and share their stories with others. All three women are always looking for opportunities to give back, such as working closely with organizations such as International Children’s Advisory Network (iCAN) and the Every Life Foundation.
I was honored to participate in PRA’s 2019 World Children’s Day celebration and meet these inspiring women. Through their willingness to share their unique insights and experiences, their message is a reminder to us all that is it our job to help ensure children in clinical trials have a voice – when they most need their voices to be heard.
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