May 8, 2023

Circuit Connections—Meet Sagan

Here at Circuit Clinical, our team has experience across a broad span of multiple therapeutic areas. We believe in sharing this knowledge, experience, and their stories—they are incredibly important and valued as part of our company and culture.

Today, we're interviewing Sagan Loburak-Grace, RN, BSN, Virtual Research Coordinator, as part of our ongoing campaign: Circuit Connections.




1. When did you begin working in clinical research and expand to where you're today?

When I was 17, my older brother had a severe spinal cord injury. I felt so helpless back then. From that experience, I knew that I wanted to make a difference through healthcare. In 2006, I returned to college to get my Bachelor of Science in Nursing and become a Registered Nurse through Cedar Crest College.  

After graduating, I knew I wanted to work in pediatrics, but in my first job as a nurse, I had to do a dreaded night shift in either med-surg or step-down units. Nightshift was mentally demanding, and sometimes I missed a regular daytime life and schedule. And alas, with that, I did the Intermediate ICU in 2012.

Internally, I still did not understand why I was doing this, and I wanted to find something “closer to home” to remind me why I became a nurse. So, I opted to transition to the Medical ICU in 2013. From there on, I started my adventure with Pediatric Homecare and Family Practice–both dayshift, from 2013 to 2015. I loved these roles and my regular daytime hours, but again, something was missing, and I could not pinpoint what it was. I kept seeking various positions to find my true nursing passion; however, I still yearned to figure out who “Sagan” was as a nurse.

Eventually, I had a fantastic opportunity to work at Lehigh Valley Health Network (LVHN): Network Office of Research and Innovation as a Clinical Research Coordinator II (Registered Nurse). I loved this role because I worked with exceptional practitioners seeking new opportunities. I started my research role working on Maternal-Fetal Medicine studies: (1) Chronic Hypertension in Pregnant Women and (2) Pre-Term Labor: Oxytocin vs. Foley Catheter Placement.

I fell in love with my career and found my healthcare niche in clinical research and, eventually, rare diseases! When the maternal-fetal medicine studies closed, a local community member, Sean Recke, reached out to my director and pleaded for a clinical research study for an ultra-rare disease called Niemann-Pick Type C (NPC); his son Adam was diagnosed with NPC. Lehigh Valley was the second site in the United States that was up and running for this clinical study. I was proud to be the study coordinator and worked with a fantastic team of neurologists, hematologists, and healthcare providers. 

My initial research spanned from 2015 to 2018, running phase I to phase IV clinical trials covering protocol management to pharmacovigilance project management. Although there were other studies that I was involved with, such as RSV in pre-term infants, sepsis treatment in the ICU, supplemental nutrition in infants, and phase I oncology studies (while working at the University of Pennsylvania)–I found my “research-baby” in the Niemann-Pick Type C (NPC) study. NPC allowed me to use my logistical, practical, and coordination skills to initiate, execute, and run a clinical trial successfully. I made a difference in the lives of children turned away from pharmaceutical companies, unable to travel to the NIH, and desperate for treatment, if not to save their own lives–to make a difference for others.  

In 2019, I started working for Easterseals as a pre-K school nurse and performing community-based early intervention evaluations for birth to newborn infants. I enjoyed doing this because I provided research-based knowledge; however, the COVID pandemic struck, and in-person learning and evaluations changed. I continued to miss working with pediatric rare diseases and medically fragile children, and once again, the inner twinge questioning what I was doing began.

I truly yearned to get back into research, but it was hard to get back “into the game” when I was out for an extended time. At the same time, I still yearned for something great to fulfill my need to care for others. From 2020 to 2021, a unique opportunity as a School Nurse for a school for the Deaf working in their pre-K and early childhood center became available. In this role, as with every position, I learned something new, and this time it was that language develops on the mere stem of thought, idea, and innovation, somewhat similar to how research works. Alas, COVID truly impacted who I am and what I want to do in my career. I continued working as a School Nurse and even started my graduate program from 2020 to 2023 while constantly reflecting on my role as a Clinical Research Coordinator.   

My wedding was in October 2022, and on the big day, I invited a few individuals who always joked and said, “When you get married–you better invite us… you’re like family.” Of course, I had to invite my former Principal Investigator and one of my former research patients and family–who was like a little sister to me. I had the honor of having Dr. Morkous, Mihaela (mother), Vivi (former patient), Nick (father), and Mimi (grandmother visiting from Romania) at my wedding and reminding me that the NPC trial helped to bring these individuals to celebrate my special day. That was over eight years of hope and triumph for all these individuals, and I know there is so much more to come! I thrive on providing hope when all options are exhausted, establishing a relationship of support and opportunity, and utilizing research to promote innovations.

In January 2023, Circuit Clinical responded to a resume I submitted online. I was thrilled to discuss opportunities and even allowed my thoughts to linger on how my desire to work in research again could be fulfilled. In time, the Circuit team found a position perfect for my lifestyle needs, and I started with the MD Prescreen Team as a Virtual Coordinator in March 2023. 

At last, I have returned to research within a non-clinical yet clinical team and can utilize my knowledge and background to support prescreening of patient eligibility. I can talk with my husband, who works for a pharmaceutical company, and speak to my biostatistician best friend, who works for a CRO. All my knowledge and efforts will help the needs of patients seeking more options for their medical concerns. I am thankful to have people pick my brain and seek evidence-based background in my knowledge. And now, I know there are so many avenues that research can take you, and I will continue to contribute my hope, skill, and knowledge to this critical work.


2. What made you want to work in clinical research (and/or healthcare)?

Almost losing my brother to a spinal cord injury helped me become a nurse, and working with Niemann-Pick Type C families moved me toward research. I was given the chance, with no research experience–other than that of nursing school, to make a difference in people’s lives. Of course, nursing requires compassion, care, and “doing good,” but there are known and proven treatment modalities. 

Working with the families and children with NPC showed me how families search high and low to find a saving grace and sometimes never find it. People told stories about the cost of medications, the extensive travel, and how often these families managing a rare disease are turned away and told there no options exist. Research is more than hope; it is the search for answers. That’s why I want to do research. 

But, when I started to do research work, I also learned how research can provide many options when standard treatments do not exist or do not work well. Often, society does not realize that research is not all about “lab rats” and Petri dishes. Clinical trials can often provide alternatives, new choices, and more options when all others have been exhausted. This knowledge draws me to research.


3. What is an example of a story/article that inspires you about doing clinical research?

When people believe that “all hope is gone,” I want them to know there must be another way, another option, or another route. They may feel defeated, but for me, that is when my mind starts wondering if there is something out there and just not yet available through standard options. I love the medical world, the scientific realm, and the art field. In all these areas, I seek the possibilities of “it” all the time. I look up the background, the evolution, and the rationale/science behind “it.” I love that there is so much more to the picture than I initially knew that is waiting to be discovered just by searching or researching.   

When I worked at Lehigh Valley Health Network (LVHN), my first investigator meeting for the Niemann Pick Type C research study inspired me. I traveled to West Virginia to meet with representatives from the pharmaceutical company and many scientists, researchers, physicians, and study coordinators. I was honored to meet with a child with NPC. The story of this child and his family made me feel a greater connection to my work running this clinical research trial. 

When I returned to LVHN, I met with Sean Recke, the father who initially approached my department about running the Niemann Pick Type C study. I greatly respected this man, his family, and the NPC community. Over time, my heart became attached to these families and all their hard work in promoting, supporting, and raising awareness for this disease. I learned so much about ultra-rare and orphan diseases. Sean showed me the foundation he runs: Race for Adam. And another family introduced me to the SOAR organization committed to accelerating research and approvals for NPC treatments.

While it breaks my heart to know these children had “normal lives,” and as they age, they were diagnosed with such debilitating diseases, my nurse’s heart flutters with happiness to know that communities and advocates unite to support local individuals and individuals worldwide. The Race for Adam Foundation and their fundraising campaign raise money for Niemann Pick Type C and promotes research efforts to help find a cure. I have attended runs, walks, hockey-game nights, golf outings, dine and donate, and other fundraising efforts. I have grown close to several surrounding families in my area, and I will attest that they help my passion to thrive. Race for Adam and SOAR have profoundly impacted me and the families they support through their connected efforts to advance research.

Please click these links below to learn more about Adam, the first patient enrolled in NPC Study at LVH, and the Race for Adam and SOAR foundations: 

Article about Adam in the NPC Study at LVHN

Race for Adam