Join the Simons Searchlight Study

In our journey towards finding a cure, we have partnered with Simons Searchlight for Research Studies and a Biorepository. Learn all about Simons and see how to participate in this research.

Help us speed research efforts by building a readily-available set of data on STXBP1.

What is Simons Searchlight?

• Simons Searchlight is a study, funded by the Simons Foundation, that aims to collect natural history information for families with specific genetic changes that have a known association to neuro-developmental disorders, like seizures, developmental delay, and/or features of autism

• By collecting long term data about natural history, we can improve our understanding of genetic conditions, and ultimately contribute to future research. It’s important to share your child’s history so we can better to understand the spectrum of features associated STXBP1 genetic changes.

• Simons hosts a secure place to share your genetic, developmental, and medical information. Simons also collects interview and survey data from families, called “patient-reported outcomes” which provide important information that complements medical history. Reports and insights on the data collected through Simons are available to families through our website. Curated data sets are made available to interested researchers.

• Genetic and other subject matter experts are available to answer your questions through the “Ask an Expert” tool

• The registry is international, but does currently require the participant speaks English fluently and cannot use a friend/family member to translate.

• The first step is to indicate your interest in joining the research project and registry. Visit the Simons Searchlight website and click “Join Us”. Consent is completed online. If you have any questions, just call +1-855-329-5638 for help.

• Click the image below or use this link to watch a video and learn more about why natural history studies and patient registries are so important.