Predictors of Caregiver Adaptation to Pervasive Developmental Disorders
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT00496210|
Recruitment Status : Completed
First Posted : July 4, 2007
Last Update Posted : February 15, 2019
This study will explore predictors of how caregivers might adapt to children diagnosed with a pervasive developmental disorder (PDD), including autism, Asperger s syndrome, childhood disintegrative disorder, Rett s disorder or other not specified PDD. PDD presents particular challenges for caregivers because of the communication and socialization challenges of affected children and because of the uncertainty surrounding the cause, prognosis and recurrence risks.
People 18 years of age or older who are the primary caregiver for a child diagnosed with a PDD may be eligible for this study. Participants fill out a survey, either online or in hard copy, that includes information in the following categories:
- How being a caregiver for a child with a PDD has impacted the caregiver.
- How much control the caregiver feels that he or she or others have over certain aspects of their child s PDD.
- What the caregiver thinks caused the child s PDD.
- What coping techniques the caregiver uses in caring for a child with a PDD.
- How uncertain the caregiver feels about his or her child s PDD.
- What the caregiver feels about him- or herself as a caregiver of a child with a PDD.
- General questions about the caregiver, his or her family and the child with a PDD.
|Condition or disease|
|Autism Asperger's Syndrome Rett's Disorder|
|Study Type :||Observational|
|Actual Enrollment :||324 participants|
|Official Title:||Understanding Caregiver Adaptation to Pervasive Developmental Disorders|
|Study Start Date :||June 27, 2007|
|Study Completion Date :||December 7, 2015|
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00496210
|United States, Maryland|
|National Human Genome Research Institute (NHGRI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Barbara B Biesecker||National Human Genome Research Institute (NHGRI)|