Clinical Research Nurse Shares What to Know About Clinical Trials
, by Brittany Cordeiro, NCI-CONNECT Program Manager
Kathleen Wall helps people with brain and spine cancers understand and participate in clinical trials, which are designed to find new ways to treat people and improve their quality of life. She shares the information people need to know.
Research studies that involve people are called clinical trials. Researchers design clinical trials to find new ways to treat people and improve their quality of life. But oftentimes people have a negative association with clinical trials—a perception that Clinical Research Nurse Kathleen Wall hopes to change.
“Clinical trials are a way that effective treatments become standard care,” says Wall. “ However, they are not without risk, and it is important for people to be educated about what they are participating in.” She enrolls and manages people on clinical trials at the NCI Center for Cancer Research's Neuro-Oncology Branch.
Wall was inspired by her parents to work in health care. They both worked at hospitals and, in particular, her mother was a leukemia nurse. Dinner table conversations centered on patient care. Wall received her Bachelor of Science in nursing from The University of Texas Health Science Center at Houston in December 2009. She joined The University of Texas MD Anderson Cancer Center in Houston in 2010 and was an inpatient nurse for leukemia and lymphoma/myeloma. Then, she transitioned to research nursing for multiple myeloma in 2013. She came to NIH to join NCI-CONNECT in 2018.
“I became a nurse to interact with and help people. As a research nurse, I build relationships with patients and I get to be part of developing new therapies,” Wall says.
Enrolling Patients in Clinical Trials
When people with brain and spine cancers visit the NCI-CONNECT Clinic, they have the opportunity to participate and learn about its clinical studies. Some clinical studies test new treatments, such as a new drug or medical therapy. Other clinical studies do not involve testing new treatments. They are designed to gather information about a disease.
A patient is first identified as eligible for a trial by an NCI-CONNECT nurse practitioner or neuro-oncologist during their clinical consultation. The neuro-oncologist informs patients about the type of therapy, side effects, or other drug treatment-related impacts. Then, Wall meets with the patient to discuss the clinical trial criteria, any screening tests, and the expected schedule of trial therapies in more detail. If the patient qualifies and agrees to participate, the physician and Wall review the informed consent documents with the patient.
Wall mainly focuses on helping people with rare brain and spine tumors participate in clinical trials that are studying cancer drugs or new therapies. These currently include:
- Immune Checkpoint Inhibitor Nivolumab for Patients with Rare CNS Cancers
- Marizomib for Patients with Ependymoma
- Sunitinib for Patients with Sarcomas of the CNS
- Carboplatin and Bevacizumab for Patients with Ependymoma
Wall coordinates the care of patients on these clinical trials. This includes scheduling tests and procedures, monitoring symptoms and side effects, and communicating with providers. “There is a lot of behind-the-scenes work to coordinate visits and to collect data and document all events related to the trial,” Wall says. The work is an important step to learn if new treatments are effective.
Why People Should Participate in Clinical Trials
Clinical trials are the final step in a long process that begins with research in a lab. Before any new treatment is used with people in clinical trials, researchers work for many years to understand its effects on cancer cells in the lab and in animals. They also try to figure out the side effects it may cause.
“We have a lot of expert doctors who are leading the field in clinical research on rare brain and spine tumors, which currently do not have effective treatments,” Wall says.
If patients participate in clinical trials, it can move new treatments forward faster.
Wall understands that people are afraid or worry about the side effects and symptoms. “Patient safety is our top priority. I communicate often and openly with patients and their treating doctor. It is so important we know everything the patient is experiencing,” Wall says. “Clinical trials are voluntary. At any time, a patient can stop participating.”
The biggest barrier to clinical trial participation may also be accessibility or traveling for treatment. Patients on clinical trials at NIH are provided financial assistant for travel, and all consultations, tests, procedures, and treatments at the clinic are free-of-charge.
NCI-CONNECT also works with a network of doctors and institutions called the Brain Tumor Trials Collaborative (BTTC) to find new and effective treatments for people with brain and spine tumors.
“We have a lot of resources to help patients. We also have social workers and a health and wellness counselor, and lots of online educational information,” Wall says. “People who participate in clinical trials truly are heroes. They’re advancing treatment for themselves and other people in the future.”