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Home > "I" Clinical Trials Conditions > Issues Surrounding Prenatal Genetic Testing for Achondroplasia  Issues Surrounding Prenatal Genetic Testing for Achondroplasia
Issues Surrounding Prenatal Genetic Testing for Achondroplasia
For Condition: Achondroplasia,Dwarfism
Status: Completed
Sponsor(s): National Human Genome Research Institute (NHGRI) ,
Synopsis: Since the gene responsible for achondroplasia was identified in 1994, it has become possible to test for achondroplasia prenatally. Moreover, prenatal genetic testing for achondroplasia is relatively simple and is highly likely to be informative for any couple seeking testing. Four diagnostic laboratories in the U.S. are currently performing prenatal genetic testing for achondroplasia. Before prenatal genetic testing for achondroplasia becomes more widely available, however, it is essential that we learn more about the lives of affected individuals and their families, the implications of offering testing for achondroplasia, and the education and the counseling needs of this community. Personal interviews and stories have been published and discussed at national meetings (Ablon 1984). We conducted a pilot telephone interview survey of 15 individuals with achondroplasia. What is needed now is a large scale quantitative study of the community of little people and their families. To meet this need, we have developed a survey tool to analyze family relationships, quality of life, tendencies toward optimism or pessimism, information-avoiding or information-seeking behaviors, social support, involvement in Little People of America Inc. (LPA), self-esteem, sociodemographics and views on achondroplasia, religiousness, reproductive and family plans, genetic testing, and abortion. The self-administered survey will be completed nationally by a sample of persons with achondroplasia and their family members.
Details: Since the gene responsible for achondroplasia was identified in 1994, it has become possible to test for achondroplasia prenatally. Moreover, prenatal genetic testing for achondroplasia is relatively simple and is highly likely to be informative for any couple seeking testing. Four diagnostic laboratories in the U.S. are currently performing prenatal genetic testing for achondroplasia. Before prenatal genetic testing for achondroplasia becomes more widely available, however, it is essential that we learn more about the lives of affected individuals and their families, the implications of offering testing for achondroplasia, and the education and the counseling needs of this community. Personal interviews and stories have been published and discussed at national meetings (Ablon 1984). We conducted a pilot telephone interview survey of 15 individuals with achondroplasia. What is needed now is a large scale quantitative study of the community of little people and their families. To meet this need, we have developed a survey tool to analyze family relationships, quality of life, tendencies toward optimism or pessimism, information-avoiding or information-seeking behaviors, social support, involvement in Little People of America Inc. (LPA), self-esteem, sociodemographics and views on achondroplasia, religiousness, reproductive and family plans, genetic testing, and abortion. The self-administered survey will be completed nationally by a sample of persons with achondroplasia and their family members.
Eligibility:
Study Type: Observational, Natural History
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: Adult individuals of either gender with achondroplasia and their first degree relatives (both short and average statured) of all ethnic and cultural backgrounds. No short-statured persons with conditions other than achondroplasia. No average-statured family members of short statured persons with conditions other than achondroplasia. No minors less than 18 years of age.
Total Enrollment: 2000
Location and Contact Information:
National Human Genome Research Institute (NHGRI)
Bethesda, Maryland, 20892
United States
Additional Information:
Study ID Numbers: 960123; 96-HG-0123
Study Start Date: August 9, 1996
Record last reviewed: August 31, 1999
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00001536
Other Dwarfism Studies:
1. Growth Hormone Therapy in Osteogenesis Imperfecta
2. Evaluation and Intervention for the Effects of Osteogenesis Imperfecta
3. The Effects of Hormones in Growth Hormone-Treated Girls with Turner Syndrome
4. Issues Surrounding Prenatal Genetic Testing for Achondroplasia
5. Study of Luteinizing Hormone-Releasing Hormone Analog (LHRHa) in Pubertal Patients with Extreme Short Stature
Related Studies:
Other Dwarfism Clinical Trials
Other Maryland Clinical Trials
Other Bethesda Clinical Trials
Issues Surrounding Prenatal Genetic Testing for Achondroplasia
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