The latest Simons Searchlight Quarterly Reports are now available, providing updated insights from participants across 86 genetic communities, including the 16p11.2 deletion, 16p11.2 duplication, distal 16p11.2 deletion, and distal 16p11.2 duplication communities. The July 2026 reports include the most current information shared by participating families and reflect the growing impact of patient-powered research.
These reports are created using information collected through Simons Searchlight’s Annual Medical History Survey. Each report includes data on age ranges, developmental and behavioral conditions, neurological conditions, and gastrointestinal conditions, along with community participation statistics.
For families affected by 16p11.2 genetic variants, these reports provide a valuable snapshot of the experiences being reported by others within the community. They can help families, healthcare providers, educators, and researchers better understand common medical and developmental characteristics while highlighting areas where additional research is needed. Families are encouraged to share these reports with members of their care and support teams.
The reports also demonstrate the power of long-term participation in research. As more families complete surveys over time, the data become stronger and more meaningful, helping researchers identify trends, better understand the natural history of rare genetic conditions, and accelerate progress toward improved care and future treatments. Every family’s contribution helps build a clearer picture of their genetic community.
The 16p11.2 Genetic Foundation encourages all eligible families to participate in Simons Searchlight and keep their surveys up to date. Families who are not yet enrolled in Simons Searchlight can learn more about joining through the Simons Searchlight website. Research advances are only possible because families are willing to share their experiences, helping turn individual stories into discoveries that benefit the entire community.
Why This Matters
The 16p11.2 community has long benefited from participation in large-scale research efforts like Simons Searchlight. Every completed survey adds to our collective understanding of 16p11.2 deletion and duplication syndromes, helping researchers answer important questions about health outcomes, development, behavior, and quality of life. Together, families are helping create the knowledge that will guide future research, clinical care, and support services for individuals living with 16p11.2 genetic variants.