Related Experiment Video
Updated: May 17, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?
Donald B Bailey1, Carla Bann, Ellen Bishop
1Social, Statistical, and Environmental Sciences, RTI International, Research Triangle Park, North Carolina, USA. dbailey@rti.org
Insights
A new brochure for fragile X syndrome newborn screening improved attention but reduced participation. Most families did not fully read the decision aid materials, suggesting a need for enhanced recruitment strategies.
Area of Science:
- Genetics
- Public Health
- Informed Consent
Background:
- Newborn screening programs aim to identify genetic disorders early.
- Fragile X syndrome is a leading inherited cause of intellectual disability.
- Informed decision-making is crucial for ethical participation in genetic screening studies.
Purpose of the Study:
- To evaluate if an informed decision-making brochure influences parental attention to study materials.
- To assess if the brochure alters parental decisions regarding participation in fragile X syndrome newborn screening.
- To examine the impact of decision aids on recruitment for genetic studies.
Main Methods:
- 1,323 families were invited to a fragile X syndrome newborn screening study.
- Families received either the original brochure or a new decision aid brochure.
- Participation decisions and material engagement were compared between groups.
Main Results:
- The decision aid brochure increased attention and perceived helpfulness.
- Mothers were more likely to read the decision aid, but only 14% read it completely.
- Families receiving the decision aid were less likely to agree to participate.
Conclusions:
- Decision aids enhance engagement with study information but do not guarantee full review.
- In-hospital postpartum recruitment challenges limit the effectiveness of educational materials alone.
- Supplementing materials with research recruiters may be necessary for informed consent in such settings.
Purpose:
To determine whether a brochure based on principles of informed decision making improved attention to study materials or altered decisions made by parents invited to participate in a fragile X syndrome newborn screening study.
Methods:
A total of 1,323 families were invited to participate in a newborn screening study to identify infants with fragile X syndrome as well as premutation carrier infants. Of these families, 716 received the original project brochure and 607 were given a new decision aid brochure.
Results:
Families were more likely to look at the new decision aid and mothers were more likely to read it completely, but the proportion of mothers who read the entire decision aid was only 14%. Families were more likely to rate the decision aid as very helpful. Consistent with informed decision making theory and research, participants receiving the decision aid brochure were less likely to agree to participate.
Conclusion:
The decision aid increased attention to and perceived helpfulness of educational information about the study, but most families did not read it completely. The study suggests that even well-designed study materials are not fully reviewed in the context of in-hospital postpartum study recruitment and may need to be accompanied by a research recruiter to obtain informed consent.
More Related Videos
12:18A Machine Learning Approach to Design an Efficient Selective Screening of Mild Cognitive Impairment
Published on: January 11, 2020
05:15Amplitude-Integrated EEG in Infants at Risk of Hypoxic-Ischemic Encephalopathy: A Feasibility Study in Road and Air Transport in Western Australia
Published on: June 21, 2024