Study Issues

Recruitment Strategies for Rare Diseases

Last Updated: Aug 29, 2013

Clinical trials of rare diseases have a unique set of challenges with respect to participant recruitment. I found a few posts here in AcrrualNet, but each seems to discuss the tendency to conduct registry trial.

What, if any, creative recruitment strategies have been successful for rare disease clinical trials?

Linda Parreco's Image

Thanks so much for posting your question on AccrualNet. You're right, there are several articles available on AccrualNet about the use of registries for rare diseases, one being the NIH Rare Diseases Clinical Research Network. As my AccrualNet colleague, Ellen Richmond, pointed out, patient databases and registry trials are the foundation of successful rare disease clinical trials and shouldn't be underestimated--and permission to participate in a rare disease database should be part of the consent form for every trial.

As you are probably aware, advocacy groups are key as are online disease-specific patient information and support groups. In fact, a recent survey of 50 biotech and pharmaceutical companies indicated that advocacy groups were used by 60% of the respondents to assist with their site or patient recruitment, and 42% indicated that the use of advocacy groups to meet accrual groups was 'successful' or 'vital to the program'. 

Have you had any experience--or are you aware of others who have had experience--using social media for recruitment of patients to rare disease trials? Here a link to an interesting experience where the Mayo clinic partnered with a social networking site to recruit women with SCAD. 

AccrualNet community members--if any of you have experience working in rare diseases, please join the conversation and share your experiences!

The AccrualNet Team

Linda Parreco's Image

And one more thing....you might be interested in the documentary film "RARE", an inspiring story about a mother who unites a group of isolated people from around the world in a quest to treat her daughter's rare genetic disorder. You can learn more about the award-winning film and watch a trailer, here

 Linda

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