Down syndrome study underway at NeuRA to improve cognition
The NeuRA study seeks to increase memory, language and learning in people with Down syndrome.
Sui Watts is like many dedicated sportspeople. The 21 year-old international equestrian and dressage competitor is determined and motivated, loves her sport and has big dreams for the future.
She also has Down syndrome.
While this hasn’t stopped Sui from achieving some amazing things in sport and other areas of her life, Sui is excited about a potential medicine that may allow her to achieve even more. This medicine is currently being tested at multiple sites around Australia in an exciting research study called Compose.
Sui, who lives with her parents in Taree, is one of many participants with Down syndrome taking part in the study. She takes the medicine twice a day and is reviewed by doctors and researchers to see whether it improves her memory, language and learning.
“This is such an exciting study,” Sui’s Mum Janett Watts said.
“If it’s successful and the medicine is made available, it would mean Sui could be more independent, better understood and play a bigger part in the local community.
“And of course she will be able to achieve more in her horse riding career.
“Sui trains very hard and rides nearly every day, it brings her a lot of happiness. She sees it as dancing with her horse, Arky.
“If the Compose study is successful, and the medicine becomes available, Sui might be able to memorise a new dressage routine in a few days. At the moment, it takes her about three months.
“She currently volunteers at three different jobs. This medicine would give her more opportunities to give back to the community.
“That would mean so much to her.”
Taking part in the study means regular visits to Sydney for Sui and Janett, a tiring eight-hour round trip.
“It’s a big commitment for us to be in the study, but it’s worth it,” Janett said.
“To be able to contribute to a study that may have so many benefits in the long run is really special.
“Sui loves going for the visits, she gets really excited. She has a special bond with the team running the study.
That team is Professor Rhoshel Lenroot, Karen Burton and Dr Jason Bruggemann. Principal Investigator, NeuRA’s Prof Lenroot says she is excited to be involved in Compose.
“This medicine was first identified by looking at what causes cognitive difficulties in people with Down syndrome and trying to address that,” Prof Lenroot said.
“The medicine being tested is a compound called BTD-001. This drug was used for decades to treat respiratory conditions and senile dementia until the 1980s when regulations changed.
“There was never a concern about the compound having any adverse effects, however, the new regulations required lengthy and expensive clinical studies that weren’t viable at the time.
“We are very excited to now have that opportunity.
“Studies have shown this compound interacts with specific receptors in the brain and can activate non-performing connections.
“It is these non-performing connections in people with Down syndrome that inhibits their cognitive function.”
Prof Lenroot said the study was instigated by parents of people with Down syndrome who wanted to improve outcomes for their children.
“It is exciting to be using this kind of research to work towards an outcome that is important to people with Down syndrome and their families.”