What is #SimonsSearchlight? A #research study looking at genetic changes associated with #autism and other #neurodevelopmental disorders. Over 200 #genetic changes (CNVs and genes) are included in this #study.
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Simons Searchlight
@s_searchlight
Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: bit.ly/SFARI_BASE
Simons Searchlight’s Tweets
Calling all early-career scientists! is invested in supporting the next generation of top #autism #researchers through its Bridge to Independence Award Program. The deadline to apply is February 16. Learn more:
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"Ask Simons Searchlight" is a new video series where our team answers our community's biggest questions. Our first video is related to toileting and Dr. Cora Taylor covers some of the best ways to manage these daily challenges: bit.ly/AskSimonsSearc
#SimonsSearchlight
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#ResearcherSpotlight Marissa Mitchel, M.S., CCC-SLP uses participant behavioral data associated with many different genetic disorders studied by #SimonsSearchlight. She discusses the important role families play in her research: bit.ly/ResearcherProf
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Studying your #genetic #neurodevelopmental disorder has a long-lasting impact on the future of research. Researchers using #SimonsSearchlight data share why families like YOURS are the key to making meaningful advancements in science: bit.ly/ResearchersUsi
#genechat
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New information has been added to the #CSNK2B gene webpage! You may find it helpful to share this webpage with friends, family members, researchers, doctors or teachers of the person who has POBINDS: simonssearchlight.org/research/what-.
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🤔❓🤔 Have a question about registering for #SimonsSearchlight? Ever wonder what researchers do with your data? Use our contact form to reach out: simonssearchlight.org/about-connect/
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#ICYMI: We've published a NEW list of genetic variants in #SimonsSearchlight. This list includes 2,069 individuals w/ a genetic condition and features new genetic communities with enough people to be released to the research community. Visit : sfari.org/resource/simon
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📣 #Researchers – did you know that you can request access to #SimonsSearchlight data through SFARI Base? This portal is supported by . Learn more about available resources: bit.ly/SFARI_Base_Res
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Our friends at are now accepting RARE Mental Health Impact Grant applications. Visit their website for more information on how to apply: globalgenes.org/rare-mental-he
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Did you know has a query builder for searching through #SimonsSearchlight data sets and finding the information you are most interested in? Learn more about how to access this resource today on SFARI Base: sfari.org/resource/sfari
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Let's take a look at some of our 2022 accomplishments! Thank you to all of our #SimonsSearchlight participants for helping to advance scientific discovery. We appreciate all your efforts. 🧬 🎉 #YearinReview
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Have a question about registering for #SimonsSearchlight? Ever wonder what researchers do with your data? You can find the answers to some of these common questions on our FAQ webpage: bit.ly/SimonsSearchli or email us at coordinator@simonssearchlight.org.
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Are you registered in #SimonsSearchlight but having trouble finding your genetic lab report? We can help! We can request it on your behalf. Log into your dashboard and click the “Lab Report Upload” task. All steps are explained in this short video: bit.ly/Esign_Genetic_.
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An early Christmas 🎁
cares deeply about our #raredisease kids & has a profound purpose to make this 🌎 a better place.
Critical topics for patient advocacy groups 2 push things forward & get organized. Share this episode far and wide.
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If you speak English, Spanish, French, or Dutch and have a genetic condition on our study list, you can participate in #SimonsSearchlight! We hope to open up our research community to more families in 2023 with additional languages. Learn more: bit.ly/SimonsSearchli
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Along 16p, the short arm of chromosome 16, a group of common variants and a rare deletion associated with autism seem to have overlapping effects on gene expression, a new study finds. Keep reading on : spectrumnews.org/news/common-an #16PDeletion #RareDiseaseResearch
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Continue research participation in #SimonsSearchlight as an adult! Learn more about our guardianship process and find helpful resources to start your planning: bit.ly/Guardianship_S
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The #SimonsSearchlight team is always working behind the scenes to support our participants like YOU! We have many new ideas in store for 2023. #2023TeamRetreat #RareDiseaseResearch 🧬
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"#SimonsSearchlight seems like an amazing way to create a large community and bring more research and awareness to many small communities that might not otherwise have such a big voice." Read more about their #raredisease story: bit.ly/Family_Story_E
#7q1123Duplication
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#SimonsSearchlight and hosted two scientific workshops this summer focused on #neurodevelopmentaldisorders (NDDs) that are linked to mutations in the #CSNK2A1 and #SETBP1 genes. Read the full report and key takeaways: bit.ly/SFARIWorkshopS
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Have you visited our #SimonsSearchlight #Genetics FAQ webpage? We want to help you better understand your or your family member's genetic diagnosis. Learn more:
bit.ly/Searchlight_Ge
#GeneChat
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📣 #Researchers – did you know that you can request access to #SimonsSearchlight data through #SFARIBase? This portal is supported by the Simons Foundation Autism Research Initiative . Learn more about available resources: bit.ly/SFARI_Base_Res
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RESOURCE ALERT! 🚨 has resources that may be useful to patients and families looking for medication assistance, school and employment, and financial information. Learn more:
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Calling all early career researchers: Applications for SFARI's Bridge to Independence Awards are now open! Attend our virtual info session on Dec. 8 to learn more. Deadline Feb 16.
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These authors review three types of data systems (patient registries, clinical trial registries and genetic databases) that are concerned with ASD or ADHD and discuss their features, advantages and limitations:
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The #SimonsSearchlight data team created new quarterly reports with updated information contributed by families like yours with a special spotlight on Seizure data. Your participation can help guide future research effort! View this valuable information: bit.ly/Genes_We_Study
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In this video, families share their participant journey of finding community in #SimonsSearchlight after receiving a diagnosis and creating meaningful connections with researchers through participating in research: bit.ly/SearchlightBui
#Thankful #RareDiseaseResearch
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#SimonsSearchlight joins people nationally in support of #EpilepsyAwarenessMonth! Of our total participants who completed their medical history, 18% of individuals with a copy number variant (CNV) and 44% of individuals with a single gene condition have seizures.
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We are #thankful for every participant who contributes knowledge to #SimonsSearchlight! During the months of June through October, we had over 560 new families join our community – bringing our total for families enrolled in 2022 to 1,401. Learn more: bit.ly/SimonsSearchli
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In the second CHAMP1 Family and Science Conference we had scientists and partners giving updates on how the research is moving forward. #CHAMP1Conference2022 #CHAMP1Research #RareDisease 🧶
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We are so excited to confirm that blood samples from three Simons Searchlight participants with CLCN4-related neurodevelopmental disorder have been included in their induced pluripotent stem cell (iPSC) creation program. You can check out the specific variants below
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We care about you and the #data you provide #SimonsSearchlight through our surveys. 📊 Below we show how many of our participants responded to the following topics related to Feelings & Emotions. Learn more about your specific gene cohort on our website: bit.ly/Genes_We_Study
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What is the connection between , and ? Learn how these programs are connected and about other research resources. bit.ly/SFARI-Programs
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Calling all #SimonsSearchlight participants! Have you completed any of our surveys this past year? You may have unclaimed Amazon rewards waiting for you. Find out by visiting your dashboard today: bit.ly/Simons_Searchl
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In this podcast two autistic researchers talk about combining their expertise with their lived experience to help improve #autismresearch: sciencefriday.com/segments/autis
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#SimonsSearchlight participants are invited to participate in an external research opportunity called FaceMatch — a platform that uses computer vision to improve diagnosis. Learn more: facematch.org.au
*This study is not affiliated with Simons Searchlight.
We are celebrating #GeneticCounselorAwarenessDay! The #SimonsSearchlight #Genetics Team primary goal is to help our families make meaning out of their genetic testing results. They are always here to help. 🧬 #genechat
▶️ Watch our Q&A from May 2022: bit.ly/3DUwbda
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