When Delaney Liskey was 11, a mysterious temporary loss of eyesight triggered her vision for patient-driven research that integrates personal experience into scientific inquiry. She was diagnosed with pediatric onset multiple sclerosis (MS) — a rare form of the neurological disorder in which the inflammatory system attacks the central nervous system, disrupting signals between the brain and the body.
Thirteen years later, she is among the inaugural class of the Regenerative Sciences Ph.D. track within Mayo Clinic Graduate School of Biomedical Sciences. One of her goals is to lead research into MS as a patient-scientist and inspire others to do the same with their diseases.
"Patients are essentially like a walking database. They have access to information on how the disease affects the body because they're uniquely experiencing it themselves," says Liskey. "I had a whole set of questions based on my own experiences that were not currently being asked in the field. The patient viewpoint is almost like the missing perspective in research."
Regenerative medicine seeks to shift the focus from treating disease to rebuilding health by repairing, replacing or restoring damaged tissues, cells or organs. Mayo Clinic's Center for Regenerative Medicine is at the forefront of this movement, training future physicians and scientists using a curriculum it has developed for the new regenerative sciences doctoral program.
Vowing 'never again'
As a sixth grader, Liskey sat frightened and frustrated as physicians explained to her parents the complexities of treating pediatric-onset MS.
"The doctors would enter my hospital room and discuss concepts with my parents that went well above a child's vocabulary level. And the next thing I know, I would be wheeled away to have invasive procedures done to me. I was super afraid, and in efforts to offer my counterarguments, all I could do was cry. I was determined not to let that happen again," she says.
When her parents left her in her hospital room with an iPad, thinking she would play games, she instead put her budding investigative skills to work.
"I was researching everything that I had heard. I looked up every single thing that I didn't know the meaning of or anything that triggered my interest. I was asking questions of anybody who would walk into the room and listen to me. Whether it was the janitor, kitchen staff, nurses or doctors, I always had something to ask about, and I realized that everyone had something to teach me," she says.
Integrating an uncommon research perspective
As she grew to be a teenager, Liskey's insatiable curiosity about her disease sharpened her critical thinking skills and built her vocabulary to communicate about it. Her experiences with MS shaped her research interests at Mayo Clinic.
For example, when she was 16, her disease triggered an inflammatory condition known as optic neuritis. Due to the severity of the attack, she lost all vision in her left eye. Eventually, she regained about 40% of her sight, but she continues to live with visual impairment. Liskey is now applying that patient perspective to research into optic neuritis and its relation to a broad range of diseases, including MS.
"I'm really interested in how we could promote vision restoration ― not just in this context, but in any vision disorders that affect the optic nerve," says Liskey. "My current research focuses on how to differentiate between the optic neuritis caused by MS and optic neuritis in other related diseases."
Beyond that, Liskey is expanding her investigation past brain and spinal cord research to broader discoveries in neurodegeneration. She has a particular interest in finding ways to unleash the body's potential to regenerate or heal itself.
"Until now, there have been few if any options for therapies in the context of neurological regeneration. I'm very interested in discovering ways to promote regeneration of myelin — the protective coating on nerves — that could ease symptoms for MS patients," says Liskey.
A third area of Liskey's interests involves finding ways to equip patient-scientists to perform research into their own diseases. She has established The International Society of Patient Research Scientists to train and track the number of patient research scientists and their advancements.
"She has enormous potential as a researcher. She's bringing a passionate perspective that can be helpful in designing future studies. What questions should we ask? How should we ask them? What are the most patient-centered outcomes we need to capture," says Sean Pittock, M.D., director of Mayo Clinic's Center for Multiple Sclerosis and Autoimmune Neurology and of Mayo's Neuroimmunology Research Laboratory. Dr. Pittock is one of Liskey's mentors.
"Someone experiencing the symptoms of a disease is uniquely positioned to direct clinically relevant research questions. Having the patient engaged in their own bench-to-bedside discovery journey is a fresh and exciting concept," says Dr. Pittock.
Liskey gravitated toward MS research early in her college career at the University of Virginia, where she majored in cognitive science with an emphasis in neurosciences. Upon graduation, she was named a National Institutes of Health Post-Baccalaureate Research Education Program fellow based at Mayo Clinic, where she studied MS in the context of neuroregeneration. Her interest in regenerative medicine made her a good fit for the regenerative sciences Ph.D. program that began this fall at Mayo. It's one of the first-ever programs on regenerative sciences.
"Training outstanding scientists like Delaney to become the next generation of leaders in regenerative sciences and medicine is a priority of Mayo Clinic's Center for Regenerative Medicine," says Isobel Scarisbrick, Ph.D., program director for the Regenerative Sciences Ph.D. track in Mayo Clinic Graduate School of Biomedical Sciences. "We are very proud of her innovative approach to research."
Taking center stage
Liskey shared her perspective of being a patient and researcher at a TEDxJacksonville event in October. Her 10-minute talk, "Researching Your own Disease," so captivated the audience that they gave her a standing ovation. TEDx is a movement to share new ideas and research that spark conversations.
Her long-term aspiration is to establish her own lab, where she hopes to advance regenerative therapies for MS and other neurodegenerative disorders. Ultimately, she wants to make scientific discoveries more understandable for those who, like the terrified girl she once was, might not have the vocabulary or scientific background to communicate about their own complex and rare disorders.
This article originally appeared on the Mayo Clinic Center for Regenerative Medicine blog.