Bringing Clinical Trials to You

Author: NF Network

Published On: 7/7/25

Exciting advancements are being made in the development of therapies for Neurofibromatosis (NF), a complex genetic disorder that often presents unique challenges for those affected. These promising treatments are assessed through clinical trials, which serve as crucial stepping stones in the journey toward effective therapies. However, participation in these trials is limited to individuals who meet specific eligibility criteria, which can vary significantly from one study to the next.

By enrolling in a clinical trial, individuals with NF can take an active role in the research process, contributing valuable data that may lead to enhanced treatment options and, ultimately, a potential cure. Yet, despite the importance of this involvement, the prospect of participating in clinical research can be daunting. Dr. Paul Moots notes that many potential participants face numerous barriers—both personal and practical—that deter them from engaging in clinical trials. 

Common concerns include feelings of doubt, such as believing that participation "won’t help me," or questioning how their unique health experiences might be relevant to the research. Other worries revolve around the complexities of illness, like, "I have other health issues," or fears that arise from perceived risks, such as "There are too many additional risks for me" and "I don’t want to be a guinea pig." Time, financial constraints, and logistical challenges also weigh heavily on prospective participants: phrases like "I don’t have the time," "I can’t afford it," and "I can’t travel to _____ every month" resonate with many.

Fortunately, there is a silver lining: clinical studies are increasingly becoming more accessible and accommodating. Researchers are actively working to decentralize clinical trials, bringing them closer to individuals' homes and local communities. Dr. Vanessa Merker notes this burgeoning movement, which aims to streamline participation and reduce barriers for those interested in taking part.

For those who wish to delve deeper into the subject, an informative webinar featuring Dr. Moots and Dr. Merker is available for viewing here.

Additionally, individuals interested in exploring existing clinical trials can find further resources by visiting https://www.nfnetwork.org/research/participate-in-nf-research/.