It’s difficult enough to recruit patients for clinical trials when the conditions are fairly widespread, such as eczema or asthma. When we look to recruit patients for trials based on rare diseases, the difficulty is compounded by the fact that the audience of potential participants is much smaller than for the more common conditions.

Finding patients living with rare diseases is the core of the problem, but it’s also important to have an engaging message to reach out with, in order to encourage people to apply to take part in a relevant clinical trial. Here’s our recommended approaches to recruiting rare disease patients.

Recruiting through HCPs

Traditionally, Healthcare Professionals (HCPs) such as doctors are not usually a large source of patients for clinical trials. Not having the awareness of suitable trials is a factor in this, as well as the well-known lack of time that doctors have available to spend with each patient.

However, one approach that can work well for rare disease trials is to identify doctors who are submitting their patients for relevant lab tests (in the USA), then contacting them straight away with a relevant message regarding a suitable trial. Utilizing multiple methods of outreach is the best approach here – i.e. targeting the HCP’s preferred method of communication, such as email, ads on social media sites they visit, or even postal mail if that works best.

Recruiting through Patient Leaders and Patient Groups

Another fruitful avenue for recruiting patients for rare disease trials is to engage with Patient Leaders and Patient Groups. A simple Google search can help identify various Patient Advocacy Groups and the like, but a more effective approach is to use ‘social listening’ in order to identify those people who are most actively discussing relevant issues for the rare condition.

This enables you to discover which platforms have the highest level of relevant engagement for your trial – e.g. Facebook, Reddit, Instagram, TikTok – as well as the people on those platforms who it would be most beneficial to approach for promoting the trial.

Other types of platforms that are used by Patient Leaders include their own blogs and podcasts, plus Patient Group forums. Each of these can provide a useful medium for you to get the message out – for example through being interviewed on a blog or podcast, having an article featured on a forum, or using paid ads that can be featured in these media.

Patient Groups may also operate their own registry of patients that you can utilize for identifying people who fit your inclusion/exclusion criteria, thus giving you access to a potential audience of trial participants who are already pre-qualified.

Building relationships with these Patient Leaders and Patient Groups before you have a specific trial to recruit for should prove valuable when it comes to the time you are recruiting, so I recommend you adopt this method early on in the process of developing your potential treatment.

Recruiting Direct to Patients

Not everyone living with a rare disease will be able to be reached through an HCP or Patient Group. Direct outreach through such methods as digital advertising (e.g. Facebook, Google, display ads) helps spread your message as far as possible. One of the great advantages of a platform such as Facebook is the ability to share an advert with other people. Thus, if someone who isn’t living with a rare condition sees an advert for a clinical trial, they can share it with someone they know, such as a family member or friend, and make someone aware of the trial who wouldn’t have been otherwise.

As with the Patient Leader approach, there are also popular podcasts, blogs and forums you can utilise for promoting your trial through determining the likely demographics and behaviours of your pool of rare disease patients, then looking to promote the trial on media that will be popular with the target group. (e.g. older people’s health forums, golf podcasts, parenting blogs).

Similarly, traditional methods of advertising can help to reach people through having your message presented to them in a press or radio ad. It’s almost always the case nowadays that digital ads perform better than these old school methods, but given the small size of the population you’re trying to reach, it could make sense to use every means possible.

Pre-Recruitment Strategy

This is something that can be successfully adopted prior to launching a full recruitment campaign – the idea being to develop a ‘warm’ audience of interested people that can then be contacted once you are recruiting for a specific trial. It’s quite common in the rare disease pharma and biotech space for firms to focus on a particular condition, so it can make sense to start building an audience of people with that condition even before you are looking to run a trial.

As well as the advantage of having a readymade audience of people who may qualify – thus speeding up the recruitment process – you can also use this data for developing ‘lookalike’ audiences of people who have similar characteristics. This is very useful for being able to target relevant people using social media advertising once the recruitment process proper begins.

Another good benefit of adopting this strategy is that, as you aren’t recruiting for a specific trial, you won’t need to go through Institutional Review Board (IRB) or Ethics Committee (EC) approval in order to reach out to your audience. The basic principle being to introduce the concept of a potential future clinical trial that people may be interested in, then follow-up with IRB/EC approved materials when available. Again, speeding up the overall process and giving you the best chance of achieving your recruitment goals.

If you operate in the field of rare disease and want to know more about how you can recruit patients successfully, get in touch to discuss the range of options.