New Quarterly Reports – August 2023

? Thanks to participants like YOU, we released new quarterly reports containing updated information on 38 genetic communities including 7 new groups (PPP3CA, MEF2C, DYNC1H1, ANKRD11, CHD2, CUL3 and SETD5) in Simons Searchlight. Congratulations to those new communities – this is an amazing milestone.

We extend our congratulations to all genetic communities. Your ongoing support and outreach efforts have been instrumental in expanding your respective communities’ collection of high-quality, standardized data. We’re honored to be part of this journey with you. By sharing your experiences in surveys and phone interviews, you’re enabling discoveries that help many families.

View your report ➡️ bit.ly/Genes_We_Study

For eligible groups*, the latest report also analyzes developmental growth charts based on the Vineland Adaptive Behavior Scales (Vineland-3) survey. The Vineland-3 measures each person’s development in communication, self-care, social skills, and in younger children, motor skills. The data in this report shows skills at different ages and helps doctors and researchers understand how these skills change over time. 

To help families understand these charts, we created this explainer video:

*Important to note: Since we are showing individual data in this report, we are sharing the special spotlight with groups with 10 or more members who contributed Vineland-3 data. Please encourage your community to complete their Vineland survey today to be included in future reports.