“We cannot and should not, as practitioners, clinicians, scientists, make decisions or inferences, without [the patients’] input,” says Dr. Robin Lockridge, neuropsychologist for MyPART. One of her roles in MyPART is to collect patients’ input through surveys and questionnaires, known as patient reported outcomes or PROs, and use this valuable data to inform research questions about rare tumors and improve clinical care for patients.
When describing her research interests, Dr. Lockridge says, “my primary interest has always been looking at the relationship between biomedical variables and traditional psychology variables, like depression and anxiety, and where they meet,” which she explains as “the bridge between psychology and biology.” She started her research career in the lab studying how cytokines (small proteins that play a role in the immune system), specifically IL-6, relate to a patient’s feelings like anxiety and depression, but she was missing the interaction with patients. After earning her PhD in clinical psychology with a specialty in neuropsychology, she began a series of fellowships, which led her from the DC Public School System researching cognitive behavior, to the Penn State neuropsychology clinic working with patients with traumatic brain injuries, stroke, and other conditions. During a neuropsychology fellowship at Brown, she had the opportunity to study neurodevelopment in children and became interested in pediatrics.
Now, with MyPART, she’s excited to design studies on patient reported outcomes from patients with rare tumors, which can help inform how practitioners care for patients with rare tumors. Specifically, she’s interested in studying how rare tumors affect patients’ adaptive functioning (the ability to navigate through the challenges of our environment) and cognitive functioning (the ability to reason, learn, remember, and problem-solve). One of her other goals is to study patients with germline mutations (mutations in the DNA we are born with) who may not yet have developed a rare tumor and see how their cognitive functioning develops over time to see if these mutations have an impact on neurodevelopment.
The patient reported outcomes she collects through MyPART’s Natural History Study allow her to gather information directly from the patient. She explains, “it’s [the patient’s] voice I’m trying to hear…we want to hear [their] voice at the table always.” By compiling PRO data from many different patients, she explains, “[the data] become a really powerful tool, as we think about what works and what doesn’t work for patients… that’s research. We’re trying to put [the data] together to tell a really powerful story that will hopefully then change the way we advocate for something, or the way that we do something, or the way that we learn [about rare tumor research]. Our patients should already feel really proud of themselves for adding to that [process].”
When reflecting on MyPART, Dr. Lockridge says, “everybody often talks about a multidisciplinary approach but what does that mean – what does that really look like in practice – and this project [MyPART] really puts that to the test on the ground level.” She’s excited to work with a team of fellow clinicians and basic scientists with diverse backgrounds: “it “feels like a perfect blend of [basic] research and clinical, and all these minds working together, it’s definitely a lot of information at one time, [and] I absolutely think it’s super exciting.”
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