Status:
WITHDRAWN
A Long-Term Study of Cholesterol Supplements for Smith-Lemli-Opitz Syndrome
Lead Sponsor:
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Conditions:
Smith-Lemi-Opitz Syndrome
Eligibility:
All Genders
Brief Summary
Background: \- Smith-Lemli-Opitz syndrome (SLOS) is a genetic disorder that prevents the body from making enough cholesterol. People who have SLOS often need to take extra cholesterol, either in food...
Detailed Description
The purpose of this study is to learn as much as possible about Smith-Lemli-Opitz Syndrome (SLOS) by following a large group of individuals with SLOS over a period of time. We plan to measure choleste...
Eligibility Criteria
Inclusion
- INCLUSION CRITERIA:
- Inclusion of children:
- The population being studied is subjects with SLOS. Children will not be excluded, in fact, the majority of subjects being studied will be infants and children. Relatively few adults with SLOS are known. We will continue to recruit subjects of all ages from newborn to adult of both genders.
- Inclusion of women:
- Women and girls will certainly be included in the study. Women should be equally represented in this study. SLOS is an autosomal recessively inherited condition that affects males and females equally. However, since these disorders are uncommon autosomal-recessively inherited inborn errors of metabolism, STAIR investigators will have limited control over the gender mix of the study population.
- Inclusion of Minorities:
- As mentioned for gender, STAIR investigators will have limited control over the race and ethnicity mix of the study population. In order to increase the enrollment of minority subjects, with permission, we will inform the national disease support group of our studies so that subjects in other regions of the US with ethnically and racially more diverse populations may be recruited. SLOS seems to be most common in Caucasians. In the current SLOS study at OHSU, only one of the 34 SLOS subjects is Hispanic. There is only 1 report of carriers in Blacks (Nowaczyk, 2001) and only 31 cases reported in a Japanese survey. In Oregon at least, we will advertise the study at local community health clinics where large numbers of Hispanics are seen.
- EXCLUSION CRITERIA:
- None.
Exclusion
Key Trial Info
Start Date :
June 29 2011
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
October 20 2014
Estimated Enrollment :
Patients enrolled
Trial Details
Trial ID
NCT01413425
Start Date
June 29 2011
End Date
October 20 2014
Last Update
July 2 2017
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