Research

As part of our mission to foster research about LDS, the LDSF is pleased to offer the opportunity to participate in and help fun research initiatives that can range from basic science, and natural history of LDS to psychosocial and emotional issues. Your experiences, thoughts and feedback help researchers, physicians and families learn more about the history and treatment of LDS. As well, research results help the LDSF to develop educational resources to meet the needs of those impacted by LDS.

Research that is advertised and/or promoted through the LDSF has been reviewed by the LDSF board of directors and has approval through Institutional Review Boards of the primary investigator's affiliation. We invite you to take a look at opportunities available through the LDSF!

In the hopes of better understanding the incidence and natural history of seizures in Loeys-Dietz Syndrome, we are asking that any individuals who have experienced seizures contact info@loeysdietz.org. We will work with a team from Johns Hopkins University to review neurology records to determine if there are any patterns to seizures in LDS. Thanks for your participation!

Dr. Paul Sponseller and his team at the Johns Hopkins University are interested in obtaining more information on bone health in individuals with Loeys-Dietz syndrome. Entitled “The risk of osteoporosis and skeletal fractures in patients with Loeys-Dietz Syndrome (LDS),” the questionnaire aims to look at history of fractures (broken bones), soft bones and other orthopedic concerns.  

If you would be willing to spare a small amount of your time to help with this study, you can contact the study team at 410-955-0316 or email (LDSbonestudy@jhmi.edu).  The study team can tell you more about the study and answer any questions you have. After that, they will send you a short questionnaire to complete. The study would like to hear from patients who have had bone problems and those who have not to get a broad picture of orthopedic issues.  

Thank you for your consideration and support in trying to make further inroads into our understanding of Loeys-Dietz syndrome and related diseases.