Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.

The team wanted more caregivers of people with Down syndrome to finish a survey. They tried six ways to invite people: Down-syndrome groups, a national registry, clinics, social media, flyers, and e-mail blasts.

They counted how many people opened the link, started the survey, and finished it. They also watched for fake bot answers.

Almost half of the eligible caregivers who were reached said yes and sent in a valid survey. The best invites came from Down-syndrome organizations, the DS-Connect® registry, and clinic staff.

Social media and mass e-mail brought lots of clicks but also lots of junk bot data. Adding a simple bot check kept the final data clean.

Frazier et al. (2023) paid families a small amount and kept more racially diverse parents in a developmental-delay study. Mikayla et al. did not pay, yet still hit strong numbers by using trusted registries. Money helps; trust helps too.

Amore et al. (2011) showed that caregiver stress rises when families can’t reach services. Mikayla’s high response rate shows that linking surveys to those same service channels (clinics and registries) meets parents where they already are.

Emerson et al. (2023) proved you can test working memory in young children with Down syndrome if the tool is child-friendly. Mikayla’s team proves you can also collect parent input at scale if the invite comes from a friendly, known source.

If you run caregiver surveys, partner first with local Down-syndrome groups, DS-Connect®, and clinic social workers. Add one bot-screen question to keep data clean. These cheap steps can double your valid answers and give you a truer picture of family needs.