The Role of Family Functioning in Promoting Adaptation in Siblings of Individuals With Duchenne Muscular Dystrophy (DMD)

NCT01386515 | Terminated

• 2 other identifiers: 99991117711-HG-N177
• Study Type: observational
• Target: 33
• Locations: 1 country
• Sites: 1

Brief Summary

Background: 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. Objective:

• To learn more about how families with an individual with DMD function.
• To learn how siblings adapt in families with an individual with DMD. Eligibility:
• 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. Design:
• 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.

Conditions

Genetic Disease; Communication

Keywords

Adaptation; Duchenne Muscular Dystrophy; Communication about Duchenne Muscular Dystrophy; Sibling

Outcome Measures

Primary Outcomes (1)

• adaptation, behavior problems, self-concept, pro-social behavior

Eligibility Criteria

• Age: 13 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• Parents/Caregivers:
• Parent or caregiver of child with DMD and child without DMD
• Lives with child that does not have DMD
• or older
• Reads/Writes English
• Siblings:
• Sibling of child with DMD
• Lives in same household as individual with DMD
• years of age
• Reads/Writes English

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• Branstetter JE, Domian EW, Williams PD, Graff JC, Piamjariyakul U. Communication themes in families of children with chronic conditions. Issues Compr Pediatr Nurs. 2008 Oct-Dec;31(4):171-84. doi: 10.1080/01460860802475184.

  PMID: 19021037 BACKGROUND

• Bushby K, Finkel R, Birnkrant DJ, Case LE, Clemens PR, Cripe L, Kaul A, Kinnett K, McDonald C, Pandya S, Poysky J, Shapiro F, Tomezsko J, Constantin C; DMD Care Considerations Working Group. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol. 2010 Feb;9(2):177-89. doi: 10.1016/S1474-4422(09)70272-8. Epub 2009 Nov 27.

  PMID: 19945914 BACKGROUND

• Chen JY, Clark MJ. Family function in families of children with Duchenne muscular dystrophy. Fam Community Health. 2007 Oct-Dec;30(4):296-304. doi: 10.1097/01.FCH.0000290542.10458.f8.

  PMID: 17873636 BACKGROUND

MeSH Terms

Conditions

Genetic Diseases, Inborn; Communication; Muscular Dystrophy, Duchenne

Condition Hierarchy (Ancestors)

Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Behavior; Muscular Dystrophies; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Neuromuscular Diseases; Nervous System Diseases; Genetic Diseases, X-Linked

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: OTHER
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 30, 2011
• First Posted: July 1, 2011
• Study Start: June 7, 2011
• Study Completion: January 7, 2016
• Last Updated: December 12, 2019

Record last verified: 2016-01-07

Locations

US (1)