Newly revamped registry simplifies process of signing up for studies about autism, ADHD, Down syndrome and more
If you’ve ever wondered how to find out about the latest ongoing studies at the UC Davis MIND Institute, you’re in luck. The newly revamped Research Participant Registry makes it easier than ever to stay in the loop and find studies that might be a good fit for your family.
The registry is a database used by MIND Institute research teams looking for people interested in participating in studies. Current studies involve autism, attention-deficit/hyperactivity disorder (ADHD), fragile X syndrome, Down syndrome and 22q11.2 deletion syndrome. Individuals without a diagnosis are also invited to register.
“When families take part in MIND Institute studies, it helps researchers understand the causes and characteristics of neurodevelopmental disabilities and develop better treatments for the challenges that can be associated with them,” said Sally Ozonoff, a professor in the Department of Psychiatry and Behavioral Sciences and director of the MIND Institute’s Clinical Translational Core, which runs the registry.
There is a strong emphasis on enrolling participants from a wide range of backgrounds, including different racial and ethnic groups, people from urban and rural areas, non-English speakers and all genders.
“We want the conclusions that our studies reach about causes or treatments to be accurate and relevant to everyone,” Ozonoff said. “That makes it critical that we enroll families and individuals from different backgrounds.”
The registry has been around for more than two decades. More than 30,000 families and individuals have signed up over that time. There are currently about 4,100 people registered.
Research participation is a great way to learn more about your child’s development from expert clinicians. Some studies provide reports with results or can steer families to community resources and make treatment referrals.”
How the Research Participant Registry works
Joining the registry is simple. Visit the Research Participant Registry website and select “sign up online to participate.” Then follow the steps to sign up for yourself or your child(ren). You will be asked a few basic questions about demographics and diagnoses.
Once registered, your information stays active until you ask to be removed. If a study may be a good fit for your family, a study team member will contact you by phone or email. Signing up for the registry does not obligate you to take part in any studies – you can always decline.
“It’s never been easier to sign up for the registry,” said Brittani Phillips, project manager for the MIND Institute’s Clinical Translational Core. “Our new and improved site includes a user-friendly, three-step process that is easy to do on your mobile phone. It can be done in as little as 2 minutes.”
Phillips notes that there’s also a new website where people can browse all current studies at the MIND Institute to see what is interesting or relevant.
Anyone who was signed up for the registry’s previous version is still enrolled in the new one - unless they chose to opt out. There’s no need to register again.
The process of doing assessments helped me see things about my child that I hadn’t thought about before. Seeing her participate in things like visual-spatial and conversational exercises helped me think about her learning process in new ways and apply those at home and in my discussions with her teachers at school.”
Research benefits for families
Emily Cronbach’s family is one of the thousands who have taken part in MIND Institute research over the years. When her daughter Alessia was diagnosed with autism, she sought out research options and decided to enroll in the Autism Phenome Project (APP), a long-term study examining subtypes of autism. They’ve been enrolled since 2011.
“It was more helpful to me personally than I’d anticipated! The process of doing assessments helped me see things about my child that I hadn’t thought about before,” Cronbach explained. “Seeing her participate in things like visual-spatial and conversational exercises helped me think about her learning process in new ways and apply those at home and in my discussions with her teachers at school.”
Sally Ozonoff notes that Cronbach’s experience is a common one. “Research participation is a great way to learn more about your child’s development from expert clinicians. Some studies provide reports with results or can steer families to community resources and make treatment referrals,” she said.
Ozonoff and Phillips both note that there is tremendous gratitude among MIND Institute researchers for the families who take part in research.
“Please know that you make a difference,” Phillips said. “We couldn’t have learned the things we know about autism, ADHD and other disabilities without your contribution. We are so grateful for your time, commitment and willingness to help scientists and other families.”
The UC Davis MIND Institute in Sacramento, Calif. was founded in 1998 as a unique interdisciplinary research center where families, community leaders, researchers, clinicians and volunteers work together toward a common goal: researching causes, treatments and potential prevention of challenges associated with neurodevelopmental disabilities. The institute has major research efforts in autism, fragile X syndrome, chromosome 22q11.2 deletion syndrome, attention-deficit/hyperactivity disorder (ADHD) and Down syndrome. More information about the institute and its Distinguished Lecturer Series, including previous presentations in this series, is available on the Web at mindinstitute.ucdavis.edu.