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Author: ClinEdge Staff

May 08, 2018 •

3 Steps to Remember When Recruiting Rare Disease Patients

On the surface, recruiting patients for a rare disease trial can seem like a difficult task. Due to the nature of their conditions, fewer rare disease patients are available to participate, compared to patients who suffer from more common indications. Reaching these precise demographics with standard recruitment tactics can prove challenging, and once you have connected with people who are interested in your study, there is (as always) no guarantee that they will meet your inclusion/exclusion criteria.

For rare disease patients, committing to a site visit schedule can be disproportionately strenuous. Rare disease patients are often required to travel longer distances to a research site, as study locations for rare disease trials are few and far between, and the physical demands of getting to a research site – no matter the distance – may offer its own special set of obstacles.

However, there is no need to feel discouraged. A wide variety of options are available to help make your rare disease trial recruitment process more manageable. Keep these steps in mind to help ensure that you are more successful at recruiting and, ultimately, retaining rare disease patients.

1) Ask questions

When developing your study, take the time to engage in conversation with the rare disease population with which you are hoping to work. Introduce yourself to patient networks that may be accessible to you, conduct patient panels and surveys, and participate in patient conversations that are open to the public on social media. Finding ways to engage will help you better understand the pain points of your patient population(s) and identify their health goals, enabling you to curate a study that will serve them in the most valuable ways possible.

2) Partner on branding and advertising strategy

No one understands the experience of living with a rare disease better than the individuals who suffer from them. Patients know what sort of information will catch the eye of your target population and they know the most sensitive and effective ways to present the information you need to convey in your materials. They will also be able to identify the most effective mediums through which to spread the word about your trial. Working alongside your target demographic will significantly increase your odds of connecting with the “needle in a haystack” patients you are trying to reach.

3) Provide travel services

Travel is a common burden for rare disease patients. Coordinating travel itineraries for each study visit, paying to get from point A to point B, and the sheer stress that comes with traveling leads patients to drop out of trials. Eliminate this hurdle from the get-go by providing travel coordination, reimbursement, and stipend services as a part of your clinical trial. Providing travel support to your patients is an excellent way to show you care about their time and comfort, and makes the experience of participating in a trial much more pleasant. Doing this will lead to much higher retention rates; for example, ClinEdge Travel has seen a 100% retention rate for patients who utilize travel services.

Recruiting rare disease patients and running a seamless and fully enrolled trial is a very attainable goal, so long as you keep these aforementioned points in mind. Rare disease patients are unique in many ways; it only makes sense that the trials that aim to serve them will be unique too. Remember – a rare disease study is a mutually beneficial partnership between clinical researchers and the patient community. If you keep your patients always in the front of your mind, your trial will be successful.

Do you want to learn more about the rare disease patient’s experience? Check out our white paper:


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