A small Canadian charity co-ordinated a global research study to prove the link between fitness and cognition for the Down syndrome community. This data will be used to measure the impact of exercise on cognition over time. The goal is to have fitness recognized as a necessary tool for helping individuals with Down syndrome increase their independence and live their best lives. Initial data has outperformed expectations. Looking forward, 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.

Fitness isn’t something we encourage or emphasize for the Down syndrome community, because we underestimate what they can accomplish and the benefits they will receive. Yet, athletes with Down syndrome have shown that fitness has the power to not only strengthen the body, but also the mind. For example, Down syndrome athletes like Ironman Chris Nikic have observed improved memory, enhanced learning, boosted social skills, and increased confidence – all of which allow for a more independent lifestyle. Anecdotally, we know that fitness holds the power to improve cognition for people with Down syndrome, but it’s never been scientifically proven.

So, we set out to close the research gap. By collecting the required scientific data, we would prove the importance of fitness and legitimize it as a prescribed therapy. We would also drive awareness of the importance of fitness to ensure it would be accepted by doctors and caregivers alike.

Fitness holds the power to improve cognition for people with Down syndrome, but it’s never been proven through research, so we recruited 200 people with Down syndrome to do just that. Introducing Mindsets, an evidence-based, globally unprecedented study to definitively prove the link between fitness and cognition for the Down syndrome community.

We launched on World Down Syndrome Day, recruiting individuals with Down syndrome, with the goal of tracking the impact of physical activity on their cognitive abilities, on a scale that’s never been done before. We partnered with Dr. Dan Gordon, Paralympian and Associate Professor in Cardiorespiratory Exercise Physiology at Anglia Ruskin University (ARU) to lead the research study, and Dr. Henry Mahncke and his team at BrainHQ to aid us in selecting the appropriate cognitive tests. Fitbits were donated by Google. To precisely measure the impact of exercise on their abilities, researchers performed standard physical and cognitive assessments.

Dr. Gordon from ARU developed the research study, which included a fitness program that entailed 30 minutes of exercise, six days a week. In collaboration with Dr. Mahncke of Brain HQ, and following our pilot test, they selected 19 mind games for the study, based on engagement level and ease of access. Once participants were approved, they were randomly placed in one of four cohorts to meet the study’s requirements. Participants were provided a Fitbit to record their physical activity and access to the Mindsets app where they could record their cognitive exercises. The app also connected research coordinators with study participants to motivate and keep them on track.

The study cohorts.

Control: life as usual

Exercise: 30 minutes of walking/jogging 3 times/week for 8 weeks.

Cognitive: 20 minutes of brain training with BrainHQ 6 times/week for 8 weeks.

Test: Follow both the physical and cognitive exercises listed above.

To prove the positive effect of fitness on the Down syndrome community, we needed a creative solution to capture and analyze the data. Our custom-built Mindsets app enabled us to track cognitive data from each participant’s BrainHQ exercises and their exercise data from Fitbit. By integrating with the API of each app, Dr. Gordon and his team at Anglia Ruskin University could pull the anonymized data from the cloud for analysis. Our Mindsets app is the first-ever application to marry physical and cognitive data.

The app was also enabled with one-to-one communication to monitor activity, facilitate app set-up, and encourage ongoing usage. Our one-to-one communication also allowed us to keep participants engaged with motivational videos from Chris Nikic, an Ironman athlete and role model in the Down syndrome community.

Our research study has achieved 100% compliance. Survey response rates of 50% or higher are generally considered excellent.

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.