Conversations in Clinical Research – Dr. Diana Castro

Pediatric neurologist Dr. Diana Castro is the Founder and Director of the Neurology and Neuromuscular Care Center as well as the Neurology Rare Disease Center. The former is a non-profit private clinic, and the latter a for-profit research center that together operates as a hybridized healthcare facility. Dr. Castro’s novel approach to patient care and research is illuminating inventive ways that medical practices can better serve underrepresented communities and patients with unmet medical needs.

Fittingly, our interview starts as Dr. Castro practices medicine – inclusively and intuitively. Research coordinator, Jennifer Avelar, and practice manager, Siera Grano, happen to be around and Dr. Castro spontaneously invites them to join the conversation. Together they share their experience of building an impactful research-supported family practice that places emphasis on providing individualized, community-based care.

Advances in drug development require innovation in practice

Dr. Castro’s approach is interesting in that she provides specialist care, within a family practice setting, to both pediatric and adult patients with neuromuscular conditions. As a hospital-based physician, she noticed that pediatric patients with neuromuscular diseases (NMD) approaching adulthood were being transferred to adult neurology services with woefully inadequate, or completely absent transition of care. Dr. Castro saw the despair of patients and their families as they went from the care of devoted pediatric neurologists they had known and trusted all their lives, to very differently qualified adult neurologists who had scant experience with their disease.

“I felt myself losing meaning,” she said. “We were doing all this beautiful work until the age of 21 then sending the patients and their families out into a system with non-existent support. I just thought that was wrong.”

She adds, “I tried to work within the university to come up with a transition of care framework but it’s hard as you cannot control a whole hospital or even the whole private care system.”

The improvements in health span for pediatric NMD patients – made possible by advances in developing NMD therapies – were now being negatively impacted by survival into adulthood. This surreal systemic disconnect inspired Dr. Castro’s idea to start a neuromuscular practice combined with a research center to deliver much-needed continuity of care.

“The only way I saw to control things was to do it myself. So, I decided to start keeping our pediatric patients with us for the rest of their lives and not failing them as adults,” she said.

Extending equitable care beyond the hospital to the community

Change is a journey. Dr. Castro’s own professional path from medical school in Colombia to pediatrics residency in New York through to neuromuscular medicine specialization in Dallas has made her adept at navigating change. After 10 years at UT Southwestern Medical Center, she left behind the familiarity of hospital-based practice and research, setting out to try to do things differently and more efficiently.

“We need to have rules, but the system can become so big and so complicated that we forget why it is we’re doing all of this,” Dr. Castro said. “When the steps take so long, they end up limiting access.”

She continues, “Having our own place where we determine how things move and how fast they get done has opened up possibilities for patients.”

Siera Grano, the practice manager, then provides an explanation of how they have implemented a system designed to offer patients possibilities. It starts with having the non-profit clinic modeled after a family practice meaning that they can see patients of any age. As part of her specialization in pediatric neuromuscular medicine, Dr. Castro was also trained in the care of adult patients. U.S. regulations do not restrict her to specific age ranges as they may sometimes do for other healthcare professionals such as specialist nurse practitioners.

The non-profit clinic uses a sliding scale system to equitably handle healthcare costs. It considers the patient and their family’s income level and is updated annually. Patients who fall within a certain range of the poverty guidelines receive assistance, with those below the poverty line receiving free care. The clinic also works with charitable foundations to help sponsor care for those who may struggle to afford it. Being small, and intending to stay that way, allows the clinic more flexibility than large hospitals and they are able to find solutions for patients on a case-by-case basis.

No one is denied care as Ms. Grano explains, “You can pay, you can’t pay…we’re going to see you. It’s the last thing that families with neuromuscular conditions need to be worrying about. They have enough on their plates.”

Placing clinical trials in family practice to foster trust and participation

Neuromuscular diseases are often rare, complex, and lacking in effective treatment options. For these reasons, research and participation in clinical trials, including trials for DMD, are a key part of care. On this topic, Dr. Castro has a foundational philosophy: “I think you have to have a relationship with patients to talk about research. For you or your child, you need a trusting relationship with your physician to say, ‘Yes I want to participate.’”

She adds, “If you have that relationship and trust you’re going to be more successful in the research protocol than if you don’t have that attachment.”

Dr. Castro then explains that having her clinic and research center directly connected builds trust, identifies eligible patients, and allows her to support families who do not have coverage with resources such as access to a cardiology service and advanced imaging studies.

Before joining the clinic as a research coordinator, Jennifer Avelar had run clinical trials at large academic centers. Comparing that setting to the clinic she says: “I have gotten to know these families more in detail which is very nice because I don’t need to be out of the room in 15 minutes. The difference is that also we’re not just seeing our patients as a subject number, they’re not just a zero-one.”

Circling back to the topic of coverage Ms. Avelar shares: “We have patients without insurance who aren’t afraid to come. Being a first-generation immigrant, I have memories of my parents being afraid to go anywhere near a hospital. That was an issue, right? And now I see these patients come in with the biggest smiles. Even my research patients would never come in that happy to see me. So it’s very nice to have somebody be excited to actually see me this time.”

Dr. Castro expands on building trust in communities that were previously at the margins of society. She relates it to her own story: “I’m from South America. Jen is from Central America as well. And we see these families that don’t trust the system. They don’t trust the medical system and the research system.”

They have yet to coin a specific term for their model of bringing research into the community, but it is clear when speaking to Dr. Castro’s team that they are deeply thoughtful about how to support patients participating in research. In their view, clinical trials are an extension of care and a valuable opportunity to access treatments that have the potential to make patients’ lives, and those of their families, better.

People are trying to figure out a way to do medicine the way it was intended. We should be thinking about the patient first.