Recruiting participants with rare diseases

What to expect when you take part in medical device market research

What to expect when you take part in market research

July 6, 2022

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The WHO defines rare disease as an "often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population". It is no surprise that identifying these people and then actually recruiting them to take part in research is challenging. In this article we will explore some of the reasons why it is hard to recruit patients with rare diseases and how we can make it a success.

Low Prevalence

As per their definition, rare diseases are rare! They only affect a small percentage of the population In some cases, there may be only a few hundred, or even fewer, individuals with a particular disease per country, there may be others living with the condition but undiagnosed due to the nature of rare diseases and a lack of understanding within a given healthcare system. Therefore identifying them in the first place is the first hurdle. Where possible, opting for a remote methodology instead of conducting the study face-to-face would instantly offer a larger pool of potential participants. Of course we understand that in Human factors and usability this is largely not an option, in which case, we would recommend conducting national surveys to try to identify pockets of potential patients. These patients may not however be on research panels. They may not even be in online support groups so how do we find them? Asking HCPs for referrals (where they advise patients of our study and the patient decides whether they’d like to contact us) may be an option in some markets but not others, friends and family referrals or physical support groups and Patient Advocacy Groups may be a good place to start.

Patients Concerns

Once identified and invited to take part in research, patients with rare diseases may be hesitant to participate. They may be concerned about the time commitment or potential risks associated with participating or as we often find, feel that being rewarded for their time and opinions is too good to be true. Researchers should take measures to make the experience as comfortable as possible from the beginning, starting with clear communication of expectations and any risks during screening. We created a short video to outline what people can expect from attending a face-to-face research session as the prospect can be dauting if you have never considered it before.

The patients must be aware of the time commitment, of what they will be asked to do, and what they can expect. On top of that, depending on the specific condition, participants should be asked if they have any special requests to make this experience more comfortable/safe for them, such as researchers not wearing perfumes when interviewing people with respiratory conditions or allergies and adhering to strict cleaning and quarantining procedures when interviewing Cystic Fibrosis patients.

Logistics

Finally, there may be logistical challenges in recruiting patients with rare diseases for face to face market research. As mentioned, patients may be spread out across the country or even the world, and travel to a research site may not be feasible. Additionally, some may have limited mobility or may be homebound due to their condition, making it challenging to recruit them for in-person research studies. In these cases, researchers should offer either to travel to the participant’s location or to offer a remote interview using one of the most common platforms. Should the participant be willing to travel, the impact should be considered and made as easy for them as possible, perhaps providing a taxi would be appropriate or a comfortable place to rest between sessions. “The wellbeing of the patient is the primary concern for MediVoice Recruit” says Hayley. “By conducting a thorough feasibility assessment, we can provide informed recommendations to our clients regarding the best recruitment methodology. This approach ensures that the recruitment process is designed to support and prioritize the needs of the patients throughout the study while meeting our client’s targets”.

In conclusion, recruiting patients with rare diseases for market research can be a challenging task. However, with careful planning and innovative strategies, it is possible to identify and recruit eligible patients for these important studies. By working closely with patient advocacy groups and other stakeholders, healthcare research can play a vital role in improving the lives of individuals with rare diseases and advancing the development of new treatments and therapies.

Recruiting participants with rare diseases

Luci Talbot Clarke

Operations Manager

Helen Ramnought

Marketing Director

Hayley Algar

Managing Director

Laure Beavan

Recruitment Project Manager

Maria Ethridge

Recruitment Project Co-ordinator

Sarah Weir

Recruitment Project Manager

Nicola Watkins

Recruitment Project Manager

Susan Hughes

Recruitment Project Manager

Sabrina Tartaglino

Recruitment Project Manager

Arthur Marcondes de Salles

Recruitment Project Manager

George Ashford

CEO

Recruiting participants with rare diseases

What to expect when you take part in market research

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