Articles About Fragile X Syndrome

Pediatrics Supplement

In June of 2017, a supplement to the journal Pediatrics focused on fragile X-associated disorders, some of the most common inherited causes of intellectual disability. Funded by CDC, this supplement is a one-stop-shop for information on these conditions.

Read short descriptions of each article and access to the full content.

Key Findings

Key Findings: Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome
Researchers from the Centers for Disease Control and Prevention (CDC) and other organizations present data on preventive services received by children and young adults with fragile X syndrome (FXS). This research can help clinicians identify preventive care services that their patients with FXS may need.

Key Findings: Advancing Treatment and Care for Fragile X Syndrome
Fragile X-associated disorders (FXD) are among the most common inherited causes of intellectual disability or problems with learning, thinking, reasoning, or remembering. A new supplement published in Pediatrics and funded by the Centers for Disease Control and Prevention (CDC) contains some of the latest research on FXD and will be a wide-ranging resource for healthcare professionals and researchers in their efforts to advance knowledge, treatment, and quality of life for those with FXD.

Key Findings: A Comparison of Family, Financial, and Employment Impacts of Fragile X Syndrome, Autism, and Intellectual Disability
Healthcare professionals should be aware of the family financial expense when addressing the complex needs of children living with fragile X syndrome (FXS). Researchers at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC), along with RTI International, recently published findings from a study on the financial expense of caring for a child living with fragile X syndrome as compared to caring for a child with autism spectrum disorder (ASD), a child with intellectual disability (ID), or a child with both ASD and ID.
[Read articleexternal icon]

Feature Articles

Five Things You May Not Know About Fragile X Syndrome
As part of CDC’s work to educate people about the condition and to celebrate fragile X awareness month, here are five things you may not know about FXS.

Fragile X syndrome (FXS): Learning what families need, one person at a time.
FXS is the most common cause of inherited intellectual disability, yet there are still many unanswered questions about its effect on the day-to-day lives of people living with FXS and their families.

Fragile X Myths
Learn how CDC and the American Academy of Pediatrics join forces to debunk common myths about fragile X syndrome.
(Published: March 11, 2019)

Ruth’s Story
Read one family’s story of living with fragile X syndrome and find out what CDC is doing about this condition.
(Published: May 21, 2018)

Scientific Articles

*These articles are either from CDC-funded research or have at least one CDC author. The articles are listed by date of publication, most current first.

Publications

Fragile X Syndrome-Associated Emergency Department Visits in the United States, 2006–2011
Do TQN, Riley C, Paramsothy P, Ouyang L, Bolen J, Grosse SG. American Journal of Intellectual and Developmental Disabilities, 2020 Mar; 125(2): 103–108.
[Read articleexternal icon]

A Description of the Educational Setting among Individuals with Fragile X Syndrome
Nash R, Riley C, Gilbertson K, Paramsothy P, Raspa M, Wheeler AC, Dziuban EJ, Peacock, G.. American Journal of Intellectual and Developmental Disabilities, 2019; 124(1), 57-76.
[Read articleexternal icon]

Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome.
Gilbertson KE, Jackson HL, Dziuban EJ, Sherman SL, Berry-Kravis EM, Erickson CA, Valdez R.
Disability and Health Journal. 2019 May 3.
[Read Summaryexternal icon]

Pediatrics Supplement, Published June 1, 2017

Assessing the Fragile X Syndrome Newborn Screening Landscape
Riley C, Wheeler A.
Pediatrics, 2017 June 1;139(Supplement 3):s207-15.
[Read Articleexternal icon]

Autism Spectrum Disorder in Fragile X Syndrome: Cooccurring Conditions and Current Treatment
Kaufmann WE, Kidd SA, Andrews HF, Budimirovic DB, Esler A, Haas-Givler B, Stackhouse T, Riley C, Peacock G, Sherman SL, Brown T, Berry-Kravis E.
Pediatrics, 2017 June 1;139(Supplement 3):s194-206.
[Read Articleexternal icon]

FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome
Sherman SL, Kidd SA, Riley C, Berry-Kravis E, Andrews HF, Miller RM, Lincoln S, Swanson M, Kaufmann WE, Brown WT.
Pediatrics, 2017 June 1;139(Supplement 3):s183-93.
[Read Articleexternal icon]

Fragile X Newborn Screening: Lessons Learned from a Multi-Site Screening Study
Bailey DB Jr, Berry-Kravis E, Gane LW, Guarda S, Hagerman R, Powell CM, Tassone F, Wheeler A.
Pediatrics, 2017 June 1;139(Supplement 3):s216-25.
[Read Articleexternal icon]

Implications of the FMR1 Premutation for Children, Adolescents, Adults, and Their Families
Wheeler A, Raspa M, Hagerman R, Mailick M, Riley C.
Pediatrics, 2017 June 1;139(Supplement 3):s172-82.
[Read Articleexternal icon]

Public Health Literature Review of Fragile X Syndrome
Raspa M, Wheeler A, Riley C.
Pediatrics, 2017 June 1;139(Supplement 3):s153-171.
[Read Articleexternal icon]

The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary
Riley C, Mailick M, Berry-Kravis E, Bolen J.
Pediatrics, 2017 June 1;139(Supplement 3):s147-52.
[Read Articleexternal icon]

Testing the Feasibility of a Passive and Active Case Ascertainment System for Multiple Rare Conditions Simultaneously: The Experience in Three US States
Reichard A, McDermott S, Ruttenber M, Mann J, Smith MG, Royer J, Valdez R.
JMIR Public Health and Surveillance, 2016 Aug 29;2(2):e151.
[Read article]external icon

More Fragile X Syndrome Articles

Visit www.pubmed.comexternal icon and use the search term “fragile X” to find additional articles on fragile X syndrome.

CDC Articles

Search a database of articles that have been published by CDC authors within the National Center on Birth Defects and Developmental Disabilities from 1990 to present.