Clinical Trial: Parents' Experiences with Genetic Counseling

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Neuromuscular Trial/Study

http://www.mda.org/research/view_ctrial.aspx?id=221y

NAME OF CLINICAL TRIAL/STUDY:

Parents' Experiences with Genetic Counseling

DISEASE CLASSIFICATION(S):

General(GENERAL)

Myotonic Muscular Dystrophy(MMD)

Acid Maltase Deficiency (Pompe's Disease)(AMD)

Spinal Muscular Atrophy Type 2(SMA2)

Spinal Muscular Atrophy Type 3(SMA3)

Friedreich's Ataxia(FA)

Duchenne Muscular Dystrophy(DMD)

Spinal Muscular Atrophy Type 1(SMA1)

Becker Muscular Dystrophy(BMD)

Facioscapulohumeral Muscular Dystrophy(FSHD)

Congenital Muscular Dystrophy(CMD)

Limb-Girdle Muscular Dystrophy(LGMD)

Charcot-Marie-Tooth Disease(CMT)

Emery-Dreifuss Muscular Dystrophy(EDMD)

PURPOSE AND RATIONALE:

The goal of the study is to gain a better understanding of what

parents of children with neuromuscular disorders know about the

genetic basis of their child's condition, as well as how and when

this information was provided and/or obtained within the diagnostic

and management process. Results of the study will help the

investigators determine the best way to educate parents.

STUDY DETAILS:

Participation in the study involves completion of an online survey.

Questions assess parents' experiences in neuromuscular disease

clinics and are focused on the provision of genetic information.

Satisfaction regarding the delivery of genetic information during the

diagnostic and management process is also assessed. The survey will

be available through February 2009.

If you would like to participate, please take a few moments to

complete the web-based survey: Parents' Experiences with Genetic

Counseling.

http://www.surveymonkey.com/s.aspx?sm=px33yKo77QFithmcfY1sag_3d_3d

It is expected that the survey will take about 10-15 minutes to

complete.

Participation in this study is voluntary and completely anonymous, as

no identifying information will be requested.

OPENING DATES:

Late summer 2008

CLOSING DATES:

End of February 2009

TARGET NUMBER OF PARTICIPANTS:

1,000

RECRUITMENT STATUS:

Open

ELIGIBILITY REQUIREMENTS:

Participants must be the parent of a child with a neuromuscular

disorder.

CONTACT INFORMATION:

US LOCATIONS

land

Jacquelyn Francis

Graduate Student

University of land

Genetic Counseling School of Medicine

Baltimore, MD

United States

jfran007@...