The Michael J. Fox Foundation uses Facebook to recruit Ashkenazi Jews for Parkinson's study

About 10% of Parkinson's cases are linked to genetic causes, and the most common mutation associated with the disease is most prevalent among those of Ashkenazi Jewish, North African Arab Berber, or Basque descent.

Using Facebook ads, the Michael J. Fox Foundation said it lowered the cost of enrolling patients in a clinical trial designed to identify biomarkers associated with Parkinson's disease from $800 to $35 per patient.

To boost enrollment in the Parkinson's Progression Markers Initiative, the foundation utilized social media for the first time to recruit a targeted patient population — Ashkenazi Jews — for its clinical trials.

According to the MJFF, about 10% of Parkinson's cases are linked to genetic causes, and the most common mutation associated with the disease is most prevalent among those of Ashkenazi Jewish, North African Arab Berber, or Basque descent. The study plans to follow 1,000 patients in the U.S., Europe, Israel, and Australia for eight years.

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“In the U.S., due to the history of immigration, there are large communities of Ashkenazi Jews, and that's enabled us to target that population,” said Sohini Chowdhury, SVP of research partnerships at MJFF.

The MJFF's Facebook recruitment program, launched in January, is targeting participants based on their Facebook interests and preferences, ages, and proximity to metro areas with clinical study sites. Chowdhury noted that if Facebook members had interests associated with Judaism or Parkinson's disease, they were likely to have an ad about the clinical study pop up on their Facebook pages.

The ads direct users to the foundation's website, where they can find more information about the study, fill out an online form to participate, and connect with a virtual counselor who explains the study and provides information about the genetic mutation and its connection to Parkinson's disease. If the participants are interested in participating, MJFF then sends them a genetic testing spit-kit to evaluate their eligibility. Eligible participants then speak again with the virtual counselor, who provides information about the participant's results, addresses concerns about what the mutation means to him or her and their family members, and helps them enroll in the study if they're interested.

“There's a lot of stewardship in helping people go through the process, and making sure they understand the genetics and what we're trying to do,” said Chowdhury. “It's always important to remember they have a choice. They do not have to go any further than this step.”

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So far, response has been significantly stronger than traditional trial-recruitment odds. About 10% of global clinical trials never even enroll a patient, according to a 2013 report published by inVentiv Clinical Trial Recruitment Solutions.

The MJFF reported a 33% increase in the number of volunteers enrolled in the study in the U.S. since it launched a pilot program in May 2015, “and that's been consistent with this increase over time,” said Chowdhury. The MJFF plans to enroll 138 people who first contacted the organization between January and June 2016, compared to the 70 participants who were enrolled between February 2014 and June 2015, prior to the launch of the Facebook campaign.  

Chowdhury said it now costs between $7 and $24 to recruit and identify individuals who are eligible for genetic screening through a Facebook ad, compared to roughly $200 to $350 to find such individuals using traditional media such as events, ads, and newspapers.

The MJFF also piloted the program in the U.K. and Spain. The program was well-received in Spain, where MJFF targeted the country's Basque population but was less successful in the U.K., noted Chowdhury.

“What's challenging is finding the right way to culturally place these ads, craft them so that they're attractive to individuals when they see them pop up,” said Chowdhury. “I think that's something we'll continue to try to tackle.”

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To date, a total of 305 participants have enrolled in the PPMI genetics study, and the foundation plans to continue its Facebook targeting strategy through 2017 to reach full enrollment.

The MJFF also plans to consider using Facebook targeting for future studies and will prioritize its use of the social-media platform for clinical trial recruitment instead of others such as Twitter and LinkedIn, said Chowdhury.

“I would say it's because the individuals we're looking for tend to be a bit older,” explained Chowdhury. “A lot of people utilize Facebook to keep in touch with their families, and it's a good way of understanding people's interest, because we can narrow an algorithm, so we decided to use Facebook first.”