Researchers Studying DMD-Affected Families

A genetic counseling student is exploring the role of family functioning in promoting the adaptation of siblings of children with DMD

Article Highlights:
  • Genetic counseling student Belen Pappa is inviting parents and siblings of children with Duchenne MD to participate in a nationwide survey-based study.
  • A parent and a sibling aged 13-18 will be asked to fill out separate, mailed surveys. Privacy will be protected.
by Margaret Wahl on June 22, 2011 - 3:08pm

Belen Pappa, a graduate student in genetic counseling, is seeking participants for a survey-based study about psychosocial functioning in families in which a child has Duchenne muscular dystrophy (DMD).

Pappa is in the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program, which is jointly sponsored by the Johns Hopkins Bloomberg School of Public Health in Baltimore and the National Human Genome Research Institute in Bethesda, Md. (part of the U.S. National Institutes of Health).

About the study

The purpose of the study is to learn more about the relationship between how families function and how children adapt to having a sibling with DMD.

Belen Pappa

Pappa said that, while no direct benefits are expected from participation in the study, she hopes the information obtained will help professionals who interact with DMD-affected families.

Pappa is seeking parents of children with DMD who are living in the same home as their child; and sisters or brothers ages 13-18 also living in the same home as their sibling with DMD. Surveys are estimated to take about 30 to 40 minutes to complete.

There are two separate surveys, one for one parent and the other for the sibling closest in age to the child with DMD. Parents are asked to allow the sibling to complete his or her survey in private and without interference.

Personal information disclosed in the survey answers will not be shared with anyone not involved with the study. Privacy will be maintained by numbering each survey rather than associating it with a name.

Participants can request a copy of the study results.

To receive the questionnaires and postage-paid return envelopes, contact Belen Pappa, associate investigator, at (301) 443-1533 (Bethesda, Md.) or pappamb@mail.nih.gov.

MDA is not associated with this study.

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