NCT01182324|Completed
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Sponsor study identifier
Secondary identifiers
observational
21
1 country
1
Study Start
July 30, 2010
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
Not reported
Date not reportedStudy Completion
June 24, 2013
Date type not reportedThis date has not been verified as actual or estimated.
The purpose of this study is to describe the experiences of parents, clinician researchers, and industry professionals who were involved in phase II clinical trials of Ataluren for Duchenne muscular dystrophy. We are especially interested in learning about motivations for being involved in the clinical trial, expectations of the trial, the experience of the trial, and relationships between the parents of children involved in the trial, the clinician researchers, and PTC Therapeutics. In addition, we would like to learn more about whether and how families and advocacy organizations experiences in following the progress of the drug, encouraging the clinical trial, and supporting the phase II trials may have affected participants thoughts and feelings about the study.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
June 24, 2013
Date type not reportedThis date has not been verified as actual or estimated.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
July 30, 2010
Date type not reportedThis date has not been verified as actual or estimated.
August 13, 2010
Actual (reported)August 16, 2010
Actual (reported)June 24, 2013
Date type not reportedThis date has not been verified as actual or estimated.
To describe, inclusive of the perspectives and voices of all of the major participants, the shared experiences of parents, clinician researchers, and industry professionals who were involved in phase II clinical trials for Duchenne Muscular Dyst...
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
Cohen PD, Herman L, Jedlinski S, Willocks P, Wittekind P. Ethical issues in clinical neuroscience research: a patient's perspective. Neurotherapeutics. 2007 Jul;4(3):537-44. doi: 10.1016/j.nurt.2007.04.008.
Holroyd J, Guthrie D. Family stress with chronic childhood illness: cystic fibrosis, neuromuscular disease, and renal disease. J Clin Psychol. 1986 Jul;42(4):552-61. doi: 10.1002/1097-4679(198607)42:43.0.co;2-8.
Barbara B Biesecker
National Human Genome Research Institute (NHGRI)
21 participants (actual enrollment reported by the registry).
First Submitted
August 13, 2010
First Posted
August 16, 2010
Study Start
July 30, 2010
Date type not reportedThis date has not been verified as actual or estimated.
Efficacy Study of AVI-4658 to Induce Dystrophin Expression in Selected Duchenne Muscular Dystrophy Patients
Contact the study team to confirm eligibility.
Webb CL. Parents' perspectives on coping with Duchenne muscular dystrophy. Child Care Health Dev. 2005 Jul;31(4):385-96. doi: 10.1111/j.1365-2214.2005.00518.x.
Study Completion
June 24, 2013
Date type not reportedThis date has not been verified as actual or estimated.
Last Updated
April 5, 2018
Record last verified: 2013-06-24
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Source: ClinicalTrials.gov.
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