| Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome. | |
| | |
MedLine Citation:
|
PMID: 20945998 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
|
Understanding the nature and consequences of intellectual and developmental disabilities is challenging, especially when the condition is rare, affected individuals are geographically dispersed, and/or resource constraints limit large-scale studies involving direct assessment. Surveys provide an alternative methodology for gathering information but must be carefully designed and interpreted in light of obvious limitations. In this paper we discuss the potential of surveys in understanding a disabling condition; delineate characteristics of successful survey research; describe a survey of families of individuals with fragile X syndrome; and synthesize major findings. The survey has provided new information about the nature and consequences of fragile X syndrome in a cost-effective fashion, suggesting that survey methodology has a useful place in creating new knowledge about intellectual and developmental disabilities. |
| | |
Authors:
|
Donald B Bailey; Melissa Raspa; Murrey G Olmsted |
Related Documents
:
|
2531158 - Reversible horner's syndrome and lyme disease. 16020898 - Abducens nerve palsy and horner syndrome due to metastatic tumor in the cavernous sinus. 15072518 - Psychological well-being and coping in mothers of youths with autism, down syndrome, or... 15200798 - Making sense of traumatic experiences: telling your life with fragile x syndrome. 8844008 - Concordant body stalk anomaly in monozygotic twinning--early embryo cleavage disorder. 18427248 - Clinical features, pathogenesis and immunobiology of severe acute respiratory syndrome. |
Publication Detail:
|
Type: Journal Article; Research Support, Non-U.S. Gov't; Research Support, U.S. Gov't, P.H.S. |
Journal Detail:
|
Title: American journal on intellectual and developmental disabilities Volume: 115 ISSN: 1944-7515 ISO Abbreviation: Am J Intellect Dev Disabil Publication Date: 2010 Nov |
Date Detail:
|
Created Date: 2010-10-15 Completed Date: 2010-12-30 Revised Date: - |
Medline Journal Info:
|
Nlm Unique ID: 101492916 Medline TA: Am J Intellect Dev Disabil Country: United States |
Other Details:
|
Languages: eng Pagination: 447-60 Citation Subset: IM |
Affiliation:
|
RTI International, Research Triangle Park, NC, USA. dbailey@rti.org |
Export Citation:
|
APA/MLA Format Download EndNote Download BibTex |
| MeSH Terms | |
Descriptor/Qualifier:
|
Adult Child Cost-Benefit Analysis Disability Evaluation* Fragile X Syndrome* / epidemiology, genetics, physiopathology Health Surveys / economics*, methods* Humans Mental Retardation / epidemiology, genetics, physiopathology Parents United States / epidemiology |
| Grant Support | |
ID/Acronym/Agency:
|
U50/CCU300860//PHS HHS |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
Previous Document: Diagnosis and cause of death in a neonatal intensive care unit - How important is autopsy?
Next Document: Seizures in fragile X syndrome: characteristics and comorbid diagnoses.