Better Recruiting Practices for Rare Disease Clinical Trials

March 18, 2020

Rare disease clinical trials come with a unique set of challenges. However, there are a few strategies that sponsors and CROs can use to boost patient recruitment and retention.

Clinical trials are expensive – the average cost of developing a new drug is between two and three billion dollars – and recruiting active and engaged patients has long been a struggle for sponsors and CROs. However, multiple studies have shown that patients are willing to take part in trials, but one of the primary roadblocks is lack of awareness. This means that more attention should be given to digital patient outreach in order to effectively distribute knowledge about clinical trials.

This is especially important for rare disease trials. To start with, a rare condition means that there’s an objectively smaller patient base that is eligible to participate. Beyond that, for many patients living with and managing the symptoms of a chronic disease or rare condition, an average day presents a variety of challenges that people without those conditions don’t have to deal with. Reaching these patients requires both strategic marketing capabilities and a thoughtful, nuanced approach.

The Challenges of Recruiting Patients for Rare Disease Trials

When communicating with rare disease patients, one of the most important things is for sponsors and CROs to consider what living with these conditions means to patients and their families. How does it impact their day to day lives? What unique pain points does it pose? In the case of a cystic fibrosis clinical trial, for instance, sponsors and CROs should understand which symptoms their audience is particularly interested in addressing.

Further, travel to and from investigator sites may be difficult for rare disease patients, given that the less common a disease is, the more dispersed the patient population tends to be. If patients have to travel long distances to participate in research, sponsors and CROs may want to consider partnering with rideshare services like Uber and Lyft to offer free or reduced rates for transportation.

When sponsors and CROs demonstrate that they’re attentive to the concerns and challenges of their patient population, it goes a long way toward building trust. This has the added benefits of helping to keep patients engaged and increasing clinical trial adherence. Regular communication between researchers and patients can also boost compliance. For instance, text or email reminders are a convenient way to prompt patients to take their medications on time.

Digital Outreach for Rare Disease Patients

Many patients with rare diseases find support and community in healthcare-specific online forums or message boards dedicated to specific conditions. The benefits of these online communities are numerous – from giving patients access to a knowledgebase of healthcare information and specific experiences related to their conditions to finding solidarity with others who understand first-hand what their daily lives are like.

Online patient communities also present unique opportunities for sponsors and CROs. Running advertisements on these networks can be an effective way to reach relevant audiences. Messaging should speak to the personal patient experience in order to establish trust and create a meaningful connection. Some networks even include email outreach functions, allowing sponsors and CROs to directly engage with their potential patient pool.

In addition to reaching out to online patient communities, targeted search advertisements can help sponsors and CROs connect with patients who are actively looking for information about their conditions. These ads appear at the top of users’ search results and can help them discover important research and clinical trial opportunities.

Further, sponsors and CROs can use social media advertising to reach rare disease patients. Many of these patients use platforms like Facebook to share their experiences and talk about the challenges of their disease – especially through condition-specific Facebook groups. Sponsors and CROs are not able to run advertisements within these groups, but they can utilize demographic data to build an audience of relevant patients.

We’ve written before about how people with chronic or rare diseases don’t want or need to be reminded of the different challenges they face each day – they live with these conditions and have already done the research. A more effective approach is to create messaging that empowers and inspires, or that uses humor to underscore the fact that they are not alone. When it comes to crafting effective digital outreach campaigns, go with messages that are clever and avoid treating patients like they’re victims.