There are many studies that are active with SLOS patients or are looking for patients. The majority of the studies that involve our children are based on proving the benefits of using dietary cholesterol. There are also studies that use simvastatins which are being conducted with children that have more mild symptoms of the syndrome. SLOS patients can participate in as many studies as they like, all it takes is time. Although all studies will help all of our kids in the end result, it is probably best to do research to find which study best suits your needs (such as travel distance).
1. Sleep Study
4. 7001: Smith-Lemli-Opitz Syndrome: A Longitudinal Clinical Study of Patients Receiving Cholesterol Supplementation – now recruiting!
Click on the following link to learn more: http://rarediseasesnetwork.epi.usf.edu/stair/studies/7001-SLOS.htm