Research Study Opportunities

As part of our mission to foster research about LDS, the LDSF is pleased to offer the opportunity to participate in and help fund research initiatives that can range from basic science and the 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 Medical Advisory Council 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.


Prevalence & Impact of Bullying and Cyberbullying in LDS

Researchers at Johns Hopkins Medicine are interested in learning about the experience with bullying and cyberbullying (online bullying) in the Loeys-Dietz syndrome population.

Bullying and cyberbulling are reported in approximately 21% and 34% of the general population. We are trying to understand if these numbers may be different in those affected with Loeys-Dietz syndrome.

We are inviting adolescents between the ages of 12-18 years AND their parent/guardian to participate in an online survey about this topic. This survey must be filled out together and in one sitting.  To participate please click here.  


NIH Study on Loeys-Dietz

Dr. Pamela Guerrerio at the National Institutes of Health (NIH) is conducting a research study to learn more about Loeys-Dietz Syndrome and other related genetic syndromes, including Shprintzen-Goldberg syndrome.

Evaluations may involve consultations with specialists (from Allergy, Immunology, Endocrine and Bone Health, Dentistry, Craniofacial Team, Occupational and Physical Therapy, Adult Gastroenterology, and/or Pain and Alternative Medicine) and may include a blood draw, answering questionnaires, and radiology studies.

Patients will not be charged for any service offered, and medical insurance is not required. The NIH will pay for travel and accommodations for any necessary follow-up evaluations. Interested patients should contact Caeden Dempsey by This email address is being protected from spambots. You need JavaScript enabled to view it. to learn more about the study.


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

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