A small Canadian charity co-ordinated a global research study to prove the link between fitness and cognition for the Down syndrome community.

Fitness holds the power to improve cognition for people with Down syndrome, but it’s never been proven through research, so we recruited over 200 people with Down syndrome to do just that.

This data will be used to measure the precise impact exercise has on cognition over time, and lead to fitness being universally recognized as a necessary tool for helping individuals with Down syndrome increase their independence and live their best lives.

We recruited individuals with Down syndrome to participate in Mindsets, a globally unprecedented study to prove the link between increased physical activity and improved cognition within the Down syndrome community, on a scale that’s never been done before.

To recruit this niche audience with only $5000 in media, we deployed specific creative and media strategies. We targeted the tight knit Down syndrome community organically with a social video showcasing the barriers people with Down syndrome experience when it comes to fitness and encouraging recruitment for the study. We then reached out to over 50 influencers in the Down syndrome community, content creators, parents, and other key advocacy groups – to share our campaign.

As the leading global voice for the Down syndrome community, CDSS harnessed its network of community groups via email outreach, ultimately driving participants to register for our study. Our 200 participants have been recruited from four continents.

The current Down syndrome generation is going to be the first one to outlive their parents. As recently as 1983, the average lifespan of a person with Down syndrome was 25 years, today the average lifespan is 60 years - or even longer. For most, this means outliving their primary support system. However, they are also on the cusp of living independently.

If doing regular exercise leads to improved cognition, this would allow many members of the community to live on their own, with little to no supervision. The improved cognition would better equip them to develop the necessary routines and structures they need to live independently; routines and structures that we all take for granted. Introducing Mindsets, an evidence-based, globally unprecedented study to definitively prove the link between fitness and cognition for the Down syndrome community.

Concept approved by client team (CDSS) - January 2021

Partner Search and alignment January – March 2021

Study design/research plan/ethics approval – March - June 2021

Recruitment phase began - March 2021

Pilot test phase – June - August 2021

App development – March – October 2021

Research Phase – January - March 2022

Results analysis – March - April 2022

Ongoing study groups April - August 2022

Detailed analysis and peer-review September 2022 (anticipated launch of full peer-reviewed study)

Our campaign hub was built to be informative and inviting. We screened potential participants with physical and cognitive tests, including doctor confirmation, to ensure they could complete the required tasks. Once participants were approved, they were randomly placed in one of four cohorts to meet the study’s requirements.

Participants were provided a Fitbit, donated by Google, to record their physical activity and access to the Mindsets app to record their cognitive exercises. Mindsets is the world’s first app to join data from physical (Fitbit) and cognitive (BrainHQ) training apps to provide not only a seamless experience to our participants but to correlate the data for the research team at Anglia Ruskin University (ARU).

A range of abilities exist within the Down syndrome community. Based on discussions with the CDSS team and several doctors and researchers, the following decisions were made to optimize the app:

Web based to take visual and dexterity disabilities into account

Visually oriented employing preferred colour schemes

BrainHQ and ARU worked to select the ideal cognitive games

The apps were housed together to increase engagement and participation

Two-way communication encouraged dialogue between participants and researchers

Our Coach Chris videos keeps the participants engaged and motivated

Prove the importance of fitness through research and data:

• 200 participants recruited - achieving our goal of becoming the first-ever, statistically significant study on exercise and cognition within the Down syndrome community.

• Participants from four continents around the world

Drive awareness of the importance of fitness with only $5000 in media:

• 180M media impressions

• 600,000 video views, tripling our objective.

After only 8 weeks, initial data has showed life-changing improvements across the following metrics:

89% improvement in cognitive tests, a statistically significant improvement

63% reported improvements in Verbal Communication

50% reported improvements in Numeracy Skills

75% reported improvements in Self Confidence

63% reported improvements in Reading Ability

64% reported improvements in Day-to-day Life

The completed research study will be shared at world-renowned conferences and in accredited medical journals later in 2022 to ensure physical activity becomes a prescribed therapy for people with Down syndrome.