Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders.
L Kalb, L Jacobson, C Zisman and 7 others
PMID 31172337WHAT IT FOUND
Most caregivers of children with neurodevelopmental disorders agreed to join a research registry.
Consent rates rose in the autism clinic, especially among families on medical assistance. In the general psychology clinic, consent rates fell for African American caregivers over time.
Key findings
01The overall consent rate to join a research registry was 81%, with no significant difference between the autism clinic (80%) and the general psychology clinic (82%).
02In the autism clinic, consent rates increased significantly over the four-year study period, driven largely by a rise in consent among families receiving medical assistance.
03In the general psychology clinic, consent rates did not change over time overall, but decreased significantly among African American caregivers compared to other races.
STILL TO COME
How it was doneWhat they found
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study used a referred clinical sample, so findings may not generalize to the broader community of families with neurodevelopmental disorders. Consent forms were administered differently across clinics (online vs. paper) and at different times relative to the appointment, making it impossible to separate the effect of these methods from the clinic type itself. Data on caregiver perceptions of research and whether they actually participated in subsequent studies were not collected. Missing data were common for clinical variables like IQ and autism severity due to varying assessment protocols and questionnaire implementation dates.
Declared interests
The authors declared no conflicts of interest. One author provided consultation to Takeda Pharmaceuticals, but the paper states this had no bearing on the current study.
The easy way to misread this
Do not assume that high consent rates for a registry guarantee participation in actual clinical trials. The study only measured willingness to be contacted for future research, not whether families enrolled in specific interventions or studies.