The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)
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.
|Genetic Disease Communication|
|Study Design:||Time Perspective: Other|
|Official Title:||The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)|
- adaptation, behavior problems, self-concept, pro-social behavior
|Study Start Date:||June 7, 2011|
|Estimated Study Completion Date:||January 7, 2016|
Please refer to this study by its ClinicalTrials.gov identifier: 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)|