Survey of Huntington’s Disease Patients Indicates Trial Design Should Be More Patient-Centric

huntington's patients clinical trials

In a recent survey, Huntington’s Disease patients reported they are more likely to participate in patient-centric clinical trials. Here’s how sponsors and CROs can build more convenient and adaptive studies.

Developing a new drug is estimated to cost pharmaceutical companies $2.6 billion, and only 12% of drugs even make it to the marketing stage. While there are several obstacles that can derail the development of a new therapy during its clinical trial, patient recruitment has long been an expensive and time-consuming challenge for sponsors and CROs.

A recent survey of Huntington’s Disease (HD) patients strove to understand what makes eligible patients willing to participate in clinical research, and how sponsors and CROs can design trials that more directly meet their needs. The survey revealed that Huntington’s Disease patients would be more likely to enroll in studies that took their feedback and treatment goals into account.

While the survey only examined one particular group, its findings are likely applicable to clinical trial patients at large. As trial recruitment becomes increasingly complex and studies continue to be abandoned due to lack of participation, taking a patient-centric approach may help sponsors and CROs achieve their enrollment objectives.

What Huntington’s Disease Patients Expect from Clinical Trials

Conducted by the Perelman School of Medicine at the University of Pennsylvania, the study questioned 87 patients using an anonymous survey. Of these patients, 36 had been diagnosed with Huntington’s Disease, 18 were pre-manifesting carriers, and 33 were asymptomatic but at-risk of developing the condition.

Most respondents indicated they would be likely or very likely to participate in clinical trials irrespective of study design. That said, across all three groups, patient-centric studies were viewed more favorably than studies that used invasive therapies or a placebo.

In light of these results, Tanya M. Bardakjian, MS, CGC, senior genetic counselor in the Department of Neurology at Penn, stated, “We believe that a patient-centered trial design, through the inclusion of appropriate education and communication to ensure participants and advocates are informed and engaged, is likely to have a positive impact on recruitment.”

Building a Patient-Centric Trial

To design a truly patient-centric trial, sponsors and CROs should first consider their potential patients’ goals. Why are they deciding to enroll? What are they hoping to gain? Patients enroll in clinical trials for a variety of reasons, ranging from managing a specific symptom to improving their overall quality of life.

Motivations vary for each trial and condition, so it’s important for sponsors and CROs to do their research and incorporate patient feedback into their trial design. For example, if patients are concerned about the possibility of receiving a placebo, researchers may want to offer the experimental treatment to all participants at the conclusion of the trial.

After establishing patients’ goals, researchers should consider how to make the testing experience more personal and convenient. Trials can use patient-centric technologies like telehealth and wearables to reduce the burden on patients by requiring less travel and fewer in-person visits. What’s more, wearables can provide researchers with unprecedented access to patient data, facilitating a more precise and adaptive treatment plan.

If patients are required to make onsite visits, trials should help streamline their transportation. Over 50% of people who consider participating in clinical research drop out due to transportation concerns, meaning sponsors and CROs can help boost enrollment by providing free transportation to and from investigator sites. In fact, many trials have partnered with ridesharing services like Uber and Lyft to pick up and drop off eligible patients.

By incorporating patient feedback and embracing new technology, sponsors and CROs can design studies that are both flexible and effective. These patient-centric practices can help clinical trials meet their enrollment deadlines and keep participants engaged through every stage of the process.

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