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Enhancing patient and family understanding of clinical trials is crucial for broadening participation and the number of studies conducted at Manne Research Institute. Our talented clinical research coordinators create and nurture vital collaborations between the families and our research teams and are integral to the trial work we do. I want to introduce you to Vanessa Rodriguez, who is involved in neurodevelopmental follow-up studies in the neonatal intensive care unit (NICU), and Yolanda Santiago, who works on clinical trials investigating treatments for leukemia. Each brings scientific knowledge, compassion for our patients and families, and a collaborative spirit to raise awareness of how clinical study participation advances our groundbreaking medical research.
Vanessa and Yolanda balance a range of responsibilities on their respective clinical trial study teams, working closely with various stakeholders, including physicians, nurses, principal investigators, and pharmaceutical and device companies. The most important responsibility, however, is interacting with patients and families, especially during the initial conversations that form valuable connections. It is through this relationship building that Vanessa and Yolanda guide families in making an informed decision about participating in a clinical trial by explaining the voluntary nature of participation, reasons we are conducting the trial, goals and protocols of the trial, responsibilities of the families, and the ability to withdraw from the trial at any time. Depending on the setting and clinical trial, informing families and recruiting participants is time sensitive. For example, Vanessa and her clinical trial team recruit participants from the NICU who are between 33 and 48 weeks postmenstrual age—a short timeframe to recruit participants, conduct initial screenings, obtain clearance from physicians and nurses, and determine the appropriate time to approach the parents given the circumstances of having a newborn in the NICU.
While interacting with patients and families facing health challenges is difficult, Vanessa and Yolanda value those connections. They are encouraged by the enthusiasm and excitement many families have for research. Even parents who are hesitant at first often decide to participate, as Vanessa notes: “One parent told me she was so happy that she made the decision and offered to be available to let other parents know it was a wonderful experience.” Sometimes, having meaningful impacts on the lives of patients and families goes beyond introducing parents to the clinical trial process. In one case, Yolanda worked with a parent who confided in her that she could not read well enough to understand a questionnaire: “It must have taken so much for her to tell me that while she wanted her child to participate, she had this obstacle. Since the study allowed a clinical research professional to read the questions aloud, I helped the parent complete the questionnaire, which eventually led to her child’s enrollment in the ancillary portion of the therapeutic study.”
Through it all, the families tell Vanessa and Yolanda how grateful they are to participate in research that may help their child and generate insights to improve other children's health. Thanks to the generosity of volunteer participants in clinical trials and the work performed by our team of dedicated clinical research coordinators across various divisions and departments at Lurie Children’s, we are increasingly making cutting-edge scientific discoveries that are helping children everywhere live healthier lives.
With kindness and respect,
Pat
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