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About the Study

Who runs this study?

  • This study is part of the Section on Molecular Dysmorphology at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Dr. Samar Rahhal, a pediatric endocrinologist, is the Principal Investigator of the study.
  • This study is in collaboration with Smith-Lemli-Opitz Foundation who will be reaching out to potential study participants using internal contact information.

What is this study about?

  • The primary goal of this survey is to better understand the causes of death in individuals with Smith-Lemli-Opitz Syndrome (SLOS) across all ages. The gathered information will contribute to a deeper understanding about the natural history of SLOS.

What kind of commitment is involved?

  • We would like this survey to be completed by parents/guardians/caregivers of deceased individuals diagnosed with SLOS. We anticipate the survey taking between about 1 to 4 hours to complete, depending on how much information you have to share.

What are the potential benefits of participating?

  • You will not benefit personally from being in the study. In the future, other people may benefit from this study because of the knowledge gained from this study. The knowledge gained will help us to clarify the causes of death in individuals with Smith-Lemli-Opitz Syndrome.

Do participants receive payment for taking part in this study?

  • Participants will not receive any compensation for participating in the study. Participants will not be charged anything for their participation in the study.

How can I ask questions or ask for help?