Donald Bailey

Summary

Affiliation: RTI International
Country: USA

Publications

  1. doi request reprint Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?
    Donald B Bailey
    Social, Statistical, and Environmental Sciences, RTI International, Research Triangle Park, North Carolina, USA
    Genet Med 15:299-306. 2013
  2. doi request reprint Health and economic consequences of fragile X syndrome for caregivers
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709, USA
    J Dev Behav Pediatr 33:705-12. 2012
  3. doi request reprint Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study
    Donald B Bailey
    RTI International, Research Triangle Park, 3040 Cornwallis Road, NC 27709, USA
    J Genet Couns 22:108-17. 2013
  4. pmc Caregiver opinions about fragile X population screening
    Donald B Bailey
    Social, Statistical, and Environmental Sciences Group, RTI International, Research Triangle Park, North Carolina, USA
    Genet Med 14:115-21. 2012
  5. doi request reprint Medication utilization for targeted symptoms in children and adults with fragile X syndrome: US survey
    Donald B Bailey
    RTI International, Research Triangle Park, 3040 Cornwallis Road, Research Triangle Park, NC 27709, USA
    J Dev Behav Pediatr 33:62-9. 2012
  6. ncbi request reprint Family adaptation to intellectual and developmental disabilities
    Donald B Bailey
    RTI International, 3040 Cornwallis Rd, Research Triangle Park, NC 27709, USA
    Ment Retard Dev Disabil Res Rev 13:291-2. 2007
  7. ncbi request reprint Maternal depression and developmental disability: research critique
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709 2194, USA
    Ment Retard Dev Disabil Res Rev 13:321-9. 2007
  8. doi request reprint Child and genetic variables associated with maternal adaptation to fragile X syndrome: a multidimensional analysis
    Donald B Bailey
    RTI International, Research Triangle Park, North Carolina 27709 2194, USA
    Am J Med Genet A 146:720-9. 2008
  9. doi request reprint Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues
    Donald B Bailey
    RTI International, 3040 Cornwallis Rd, Research Triangle Park, NC 27709 2194, USA
    Pediatrics 121:e693-704. 2008
  10. pmc Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709 2194, USA
    J Pediatr Psychol 34:648-61. 2009

Research Grants

Detail Information

Publications39

  1. doi request reprint Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?
    Donald B Bailey
    Social, Statistical, and Environmental Sciences, RTI International, Research Triangle Park, North Carolina, USA
    Genet Med 15:299-306. 2013
    ..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...
  2. doi request reprint Health and economic consequences of fragile X syndrome for caregivers
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709, USA
    J Dev Behav Pediatr 33:705-12. 2012
    ..To describe the health and economic burden experienced by caregivers of individuals with fragile X syndrome (FXS) and test the assumption that burden is associated with specific dimensions of problem behavior...
  3. doi request reprint Design and evaluation of a decision aid for inviting parents to participate in a fragile X newborn screening pilot study
    Donald B Bailey
    RTI International, Research Triangle Park, 3040 Cornwallis Road, NC 27709, USA
    J Genet Couns 22:108-17. 2013
    ..The IDM provides a model for consent in research disclosing complicated genetic information of uncertain value...
  4. pmc Caregiver opinions about fragile X population screening
    Donald B Bailey
    Social, Statistical, and Environmental Sciences Group, RTI International, Research Triangle Park, North Carolina, USA
    Genet Med 14:115-21. 2012
    ..We sought to determine caregiver perceptions about population screening for fragile X and to examine factors potentially associated with support for screening...
  5. doi request reprint Medication utilization for targeted symptoms in children and adults with fragile X syndrome: US survey
    Donald B Bailey
    RTI International, Research Triangle Park, 3040 Cornwallis Road, Research Triangle Park, NC 27709, USA
    J Dev Behav Pediatr 33:62-9. 2012
    ..To identify the most common neurological and behavioral symptoms treated by medications in individuals with fragile X syndrome (FXS), factors associated with treatment variability, and difficulty in swallowing a pill...
  6. ncbi request reprint Family adaptation to intellectual and developmental disabilities
    Donald B Bailey
    RTI International, 3040 Cornwallis Rd, Research Triangle Park, NC 27709, USA
    Ment Retard Dev Disabil Res Rev 13:291-2. 2007
  7. ncbi request reprint Maternal depression and developmental disability: research critique
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709 2194, USA
    Ment Retard Dev Disabil Res Rev 13:321-9. 2007
    ..Research is also needed to study treatments to reduce the occurrence of both depressive symptoms and clinical depression...
  8. doi request reprint Child and genetic variables associated with maternal adaptation to fragile X syndrome: a multidimensional analysis
    Donald B Bailey
    RTI International, Research Triangle Park, North Carolina 27709 2194, USA
    Am J Med Genet A 146:720-9. 2008
    ..Future research needs to identify family, child, and support factors associated with maternal vulnerability and how adaptation changes over time in response to these factors...
  9. doi request reprint Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues
    Donald B Bailey
    RTI International, 3040 Cornwallis Rd, Research Triangle Park, NC 27709 2194, USA
    Pediatrics 121:e693-704. 2008
    ....
  10. pmc Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709 2194, USA
    J Pediatr Psychol 34:648-61. 2009
    ..With an expansion of screening, strategies will be needed to support family adaptation to unexpected and possibly uncertain genetic information provided shortly after birth...
  11. doi request reprint Co-occurring conditions associated with FMR1 gene variations: findings from a national parent survey
    Donald B Bailey
    RTI International, Research Triangle Park, North Carolina 27709 2194, USA
    Am J Med Genet A 146:2060-9. 2008
    ....
  12. doi request reprint No change in the age of diagnosis for fragile x syndrome: findings from a national parent survey
    Donald B Bailey
    RTI International, Research Triangle Park, NC 27709 2194, USA
    Pediatrics 124:527-33. 2009
    ..To determine recent trends in the diagnosis of children with fragile X syndrome (FXS) and identify factors associated with the timing of diagnosis...
  13. doi request reprint Functional skills of individuals with fragile x syndrome: a lifespan cross-sectional analysis
    Donald B Bailey
    RTI International, Research Triangle Park, North Carolina, USA
    Am J Intellect Dev Disabil 114:289-303. 2009
    ....
  14. doi request reprint Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome
    Donald B Bailey
    RTI International, Research Triangle Park, NC, USA
    Am J Intellect Dev Disabil 115:447-60. 2010
    ....
  15. ncbi request reprint Modeling the impact of formal and informal supports for young children with disabilities and their families
    Donald B Bailey
    RTI International, 3040 Cornwallis Rd, Research Triangle Park, NC 27709 2194, USA
    Pediatrics 120:e992-1001. 2007
    ..The purpose of this work was to examine factors related to perceived impact of early intervention on children with disabilities and their families...
  16. ncbi request reprint Changing perspectives on the benefits of newborn screening
    Donald B Bailey
    RTI International, Research Triangle Park, North Carolina 27709 2194, USA
    Ment Retard Dev Disabil Res Rev 12:270-9. 2006
    ..We conclude by suggesting several key research studies needed to further inform public policy...
  17. ncbi request reprint ADHD symptoms in children with FXS
    Kelly Sullivan
    The University of North Carolina, Chapel Hill, North Carolina, USA
    Am J Med Genet A 140:2275-88. 2006
    ..Teachers were more likely than parents to rate boys as meeting DSM-IV criteria for ADHD when boys had lower levels of FMRP...
  18. doi request reprint Obesity, food selectivity, and physical activity in individuals with fragile X syndrome
    Melissa Raspa
    RTI International, Research Triangle Park, NC, USA
    Am J Intellect Dev Disabil 115:482-95. 2010
    ..Continued monitoring of the health status of individuals with fragile X syndrome is recommended...
  19. pmc Regulation and mindful resident care in nursing homes
    CATHLEEN S COLON-EMERIC
    Duke University Medical Center and the Durham VA GRECC, Durham, NC, USA
    Qual Health Res 20:1283-94. 2010
    ..When managers emphasized the punitive aspects of regulation we observed a decrease in mindful practices in all facilities...
  20. doi request reprint Pediatricians' knowledge of and attitudes toward fragile X syndrome screening
    Alex R Kemper
    Department of Pediatrics, Duke University Medical Center, Program on Pediatric Health Services Research, Durham, NC, USA
    Acad Pediatr 9:114-7. 2009
    ..Fragile X syndrome (FXS) screening exemplifies the challenges of screening for rare genetic conditions, including the potential to detect carriers and the lack of evidence regarding the benefit of early intervention...
  21. doi request reprint Mood and anxiety disorders in females with the FMR1 premutation
    Jane E Roberts
    FPG Child Development Institute, The University of North Carolina at Chapel Hill, North Carolina, USA
    Am J Med Genet B Neuropsychiatr Genet 150:130-9. 2009
    ....
  22. pmc A place for genetic uncertainty: parents valuing an unknown in the meaning of disease
    Ian Whitmarsh
    University of North Carolina, Chapel Hill, NC, USA
    Soc Sci Med 65:1082-93. 2007
    ..These multiple and often conflicting evaluations of the diagnostic label reveal the rich ways families make meaning of the authority attributed to genetic diagnosis...
  23. ncbi request reprint Adaptive behavior in children with fragile X syndrome
    Deborah D Hatton
    Frank Porter Graham Child Development Institute University of North Carolina at Chapel Hill, 27599, USA
    Am J Ment Retard 108:373-90. 2003
    ..Comparison to Brief IQs indicate that children with fragile X syndrome display nonverbal IQs superior to their adaptive behavior when they are below age 10 but that these skills seem to converge as they get older...
  24. ncbi request reprint First experiences with early intervention: a national perspective
    Donald B Bailey
    Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599, USA
    Pediatrics 113:887-96. 2004
    ....
  25. ncbi request reprint Screening for Fragile X Syndrome: parent attitudes and perspectives
    Debra Skinner
    FPG Child Development Institute, University of North Carolina at Chapel Hill, 27599 8180, USA
    Genet Med 5:378-84. 2003
    ..This study examined the attitudes and beliefs of 442 parents of children with fragile X syndrome (FXS) regarding different screening options for FXS...
  26. ncbi request reprint Newborn screening for fragile X syndrome
    Donald B Bailey
    Frank Porter Graham Child Development Institute, CB 8180, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599, USA
    Ment Retard Dev Disabil Res Rev 10:3-10. 2004
    ..Fragile X syndrome is offered as a prototype for many of the issues that will face society as more genetic disorders are discovered and new technologies for screening are developed...
  27. doi request reprint Perceived quality of life in mothers of children with fragile X syndrome
    Anne C Wheeler
    FPG Child Development Institute, University of North Carolina, Chapel Hill, NC 27599 8180, USA
    Am J Ment Retard 113:159-77. 2008
    ..The most common positive factor was being a mother. However, they also indicated that parenting a child with fragile X presented challenges and stressors, primarily when the social environment was not supportive...
  28. ncbi request reprint Academic skills of boys with fragile X syndrome: profiles and predictors
    Jane E Roberts
    Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, USA
    Am J Ment Retard 110:107-20. 2005
    ..Nonverbal IQ and FMR protein expression were not associated with the level or rate of change; however, autistic behavior and maternal education were related to academic achievement scores...
  29. ncbi request reprint Discovering fragile X syndrome: family experiences and perceptions
    Donald B Bailey
    Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill, 27599, USA
    Pediatrics 111:407-16. 2003
    ....
  30. pmc Newborn screening for developmental disabilities: reframing presumptive benefit
    Donald B Bailey
    University of North Carolina at Chapel Hill, Chapel Hill, NC 27599 8180, USA
    Am J Public Health 95:1889-93. 2005
    ..Newborn screening provides other societal benefits that, in the absence of data showing harm and with appropriate attention to ethical and legal issues, warrant consideration of an expansion of targets for newborn screening...
  31. ncbi request reprint Thirty-six-month outcomes for families of children who have disabilities and participated in early intervention
    Donald B Bailey
    Frank Porter Graham Child Development Institute, University of North Carolina, Chapel Hill, North Carolina 27599, USA
    Pediatrics 116:1346-52. 2005
    ..The purpose of this study was to assess family outcomes at the end of early intervention (near the child's third birthday)...
  32. ncbi request reprint Autistic behavior in children with fragile X syndrome: prevalence, stability, and the impact of FMRP
    Deborah D Hatton
    FPG Child Development Institute, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599, USA
    Am J Med Genet A 140:1804-13. 2006
    ..9% of boys) scored at or above the cutoff for autism. CARS scores increased slowly, yet significantly, over time, and low levels of FMRP were associated with higher mean levels of autistic behavior as measured by the CARS...
  33. ncbi request reprint Problem behavior in boys with fragile X syndrome
    Deborah D Hatton
    Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599 8180, USA
    Am J Med Genet 108:105-16. 2002
    ..Children taking medication differed from boys who were not taking medication on social problems, but not on attention and thought problems. Low adaptability and more autistic characteristics predicted thought problems...
  34. ncbi request reprint Self-injurious behavior in young boys with fragile X syndrome
    Frank J Symons
    Department of Educational Psychology, College of Education and Human Development, University of Minnesota, Minneapolis, Minnesota 55455, USA
    Am J Med Genet A 118:115-21. 2003
    ..Results are discussed in terms of future research designed to further elucidate the behavioral phenotype of fragile X syndrome...
  35. ncbi request reprint Developmental screening and detection of developmental delays in infants and toddlers with fragile X syndrome
    Penny L Mirrett
    FPG Child Development Institute, University of North Carolina at Chapel Hill, 27599 8180, USA
    J Dev Behav Pediatr 25:21-7. 2004
    ..These results indicate that developmental delays could be detected in most children with fragile X syndrome through routine developmental screening by the age of 9 to 12 months...
  36. ncbi request reprint Mapping nonverbal IQ in young boys with fragile X syndrome
    Martie Skinner
    Social Development Research Group, University of Washington, Seattle, Washington 98115, USA
    Am J Med Genet A 132:25-32. 2005
    ..These findings suggest that declines in IQ are the result of steady, but suboptimal intellectual growth, rather than a true deterioration in overall intellectual functioning...
  37. ncbi request reprint Developmental trajectories and correlates of sensory processing in young boys with fragile X syndrome
    Grace T Baranek
    Division of Occupational Science, Department of Allied Health Sciences, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA
    Phys Occup Ther Pediatr 28:79-98. 2008
    ..No longitudinal study on sensory processing in children with fragile X syndrome (FXS) exists. This study examined developmental trajectories and correlates of sensory processing from infancy through preschool years in 13 boys with FXS...
  38. ncbi request reprint Video analysis of sensory-motor features in infants with fragile X syndrome at 9-12 months of age
    Grace T Baranek
    Division of Occupational Science, Department of Allied Health Sciences, University of North Carolina at Chapel Hill, NC 27599 7120, USA
    J Autism Dev Disord 35:645-56. 2005
    ..e., age walking) than later, more broad, developmental outcomes, or FMRP. Implications for early identification and differential diagnosis are discussed...
  39. ncbi request reprint Sustained attention and response inhibition in boys with fragile X syndrome: measures of continuous performance
    Kelly Sullivan
    The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599 8040, USA
    Am J Med Genet B Neuropsychiatr Genet 144:517-32. 2007
    ..For both boys with FXS and their MA matches, performance was better on the visual CPT than on the auditory CPT though this effect may be attributable to a number of factors other than the modality...

Research Grants7

  1. Attention, Memory, and Executive Function in Fragile X
    Donald Bailey; Fiscal Year: 2006
    ..abstract_text> ..