Meeting recruitment goals is incredibly challenging for any clinical trial, but it’s even more so when fewer than 200,000 people nationwide are potential candidates, as is often the case for rare disease studies.
No matter what condition they’re investigating, clinical trials are always concerned about sufficient patient enrollment. No wonder: upwards of 75% of clinical trials fail to meet recruiting targets. However, it’s even harder to reach recruiting goals for rare disease clinical trials. When pulling from an small pool of potential candidates, reaching an enrollment number that ensures reliable results can seem impossible.
It’s true that recruiting for rare disease clinical trials is in many ways a whole new ball game. There are unique challenges — even beyond patient population numbers — that accompany these kinds of trials. With that being said, the agility and affordability of digital marketing make digital solutions especially impactful, as long as sponsors and CROs are innovative in their marketing approach.
Reaching a Small Patient Pool
The FDA defines rare diseases as those affecting fewer than 1 in 200,000 people, which equates to 200,000 people or fewer in the United States. Reaching such a small pool of candidates is difficult to begin with, but that difficulty is compounded by the fact that many rare disease sufferers are misdiagnosed due to the rarity of their actual condition. In addition, many rare diseases have a high level of genotypic heterogeneity, which can make standardized results near-impossible to achieve.
For rare disease trials, success hinges on communicating with the right patients and making it as convenient as possible for them to participate in the trial. Fortunately, when it comes to reaching potential patients, many of the same tactics that work for regular clinical trials are even more effective for rare disease trials.
Facebook offers a unique opportunity to reach patients with rare diseases. With almost 2.3 billion active users, Facebook has 100% coverage of many disease populations, meaning that everyone in the world with a certain condition has a Facebook account. By targeting users that are interested in rare disease Facebook groups, sponsors and CROs can pinpoint likely trial participants out of a sea of social media users.
Patients with rare diseases tend to do a lot of research on their conditions, and there’s no better place to meet them than in their search results. With Google Ads, sponsors and CROs can target long tail keywords associated with the condition they’re studying, presenting ads to patients or caregivers who are looking for alternative treatments.
Putting the Patient First
While rare disease patients tend to be open to clinical trials, especially if treatments for their condition are currently nonexistent or lacking, it’s likely that the locations of most clinical trials make them inaccessible to many eligible patients. For a rare disease clinical trial to be successful, sponsors and CROs need to think in terms of the patient first.
Eligible patients are few and far between, so it’s worth going to them. Trials should wait and see where their patient populations are located before choosing research sites. In some cases, it may even be a good idea to travel directly to patients, especially if their condition limits mobility.
Rare diseases are attracting more clinical trial attention than ever before, but in many ways, they’re also the perfect storm of trial challenges. Between recruitment difficulties and obstacles to accessibility, it’s up to rare disease clinical trials to be more innovative, nimble, and patient-centric than any of their peers. It’s possible that these trials aren’t just creating groundbreaking treatments and cures for rare diseases; they’re also paving the way for greater efficiency and improved patient experience in all clinical trials.