The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)
|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: NCT01386515|
Recruitment Status : Terminated
First Posted : July 1, 2011
Last Update Posted : June 17, 2019
We want to learn more about the relationship between the way families function and how children adapt to having a sibling with Duchenne muscular dystrophy (DMD). What we learn will help us design better interventions for families.
- To learn more about how families with an individual with DMD function.
- To learn how siblings adapt in families with an individual with DMD.
- One parent and one child, age 13-18, from a family where another child has DMD.
- The parent and the child must be able to read and write English.
- One parent from each family will complete a survey about how family members communicate and relate with each other. The parent will also answer questions about the behavior of the child without DMD. This survey will take you about 40 minutes to complete.
- One child from each family, either a boy or a girl, will also complete a survey. This survey asks about how he/she views him/herself. It also asks about how he/she interacts with peers and family members and how he/she behaves. The survey also asks how satisfied he/she is with how his/her family functions. This survey takes about 30 minutes to finish.
|Condition or disease|
|Genetic Disease Communication|
|Study Type :||Observational|
|Actual Enrollment :||33 participants|
|Official Title:||The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)|
|Study Start Date :||June 7, 2011|
|Study Completion Date :||January 7, 2016|
- adaptation, behavior problems, self-concept, pro-social behavior
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): NCT01386515
|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)|