DATA

New Quarterly Data Reports – July 2026

Feel free to share this resource with medical providers, educators, and family members who might find it helpful.

The Simons Searchlight Team

Our July 2026 Quarterly Reports feature updated insights from Simons Searchlight participants across 86 genetic communities—including eight new groups! (full list below).

About This Report

Once a genetic community reaches 10 completed Annual Medical History surveys, Simons Searchlight creates a Quarterly Report to share back what we’re learning from the information families have contributed.

Each report highlights medical history data in four key areas:

Age Ranges
Developmental and Behavioral Conditions
Neurological Conditions
Gastrointestinal Conditions

Reports also include community participation progress, showing how families are contributing to a growing body of research data.

Stronger together means every contribution counts. By participating and being counted, families help build a clearer picture of their genetic community. As more families share their experiences over time, the data become stronger and more useful for researchers working to better understand rare genetic conditions.

Thank you to every family helping build this knowledge together. 💙

Find Your Report

Your quarterly report is posted on your Simons Searchlight webpage (find your gene webpage): bit.ly/Genes_We_Study

Share This Resource

Families are encouraged to share these reports with medical providers, educators, and others who may find them helpful.

Keep Contributing

We are grateful to all the families and patient advocacy partners who make this work possible. Your contributions help drive research forward and expand understanding of these genetic conditions. Please don’t forget to check your dashboard regularly for new surveys to help share your knowledge with Simons Searchlight.

Genetic Communities With Reports:

* 15q11.2 BP1-BP2 deletion
* 15q13.3 deletion
* 16p11.2 deletion
* 16p11.2 duplication
* 16p12.2 deletion
* 16p13.11 deletion
* 17q21.31 deletion
* 1q21.1 deletion
* 1q21.1 duplication
* 2p16.3 deletion
* 5p deletion
* 7q11.23 duplication
* ADNP
* ANK2
* ANKRD11
* ARID1B
* ASXL3
* ATRX
* AUTS2
* CHAMP1
* CHD2
* CHD8
* CLCN4
* CNOT3
* CSNK2A1
* CSNK2B
* CTNNB1
* CUL3
* DEAF1
* Distal 16p11.2 deletion
* Distal 16p11.2 duplication
* DLG4
* DYNC1H1
* DYRK1A
* EHMT1
* EIF3F
* FBXO11
* FOXP1
* GRIN1
* GRIN2A
* GRIN2B
* HIVEP2
* HNRNPH2
* IRF2BPL
* KANSL1
* KDM6B
* KMT2C
* KMT2E
* MED13
* MED13L
* MEF2C
* MYT1L
* NAA15
* NRXN1
* PACS1
* POGZ
* PPP2R1A
* PPP2R5D
* PPP3CA
* SCN2A
* SETBP1
* SETD5
* SLC6A1
* STXBP1
* SYNGAP1
* TANC2
* TAOK1
* TBR1
* TLK2
* TRIO
* TRIP12
* WDFY3
* ZNF292

5 new groups:

* CTCF
* DDX3X
* KCNB1
* KMT5B
* NBEA
* NEXMIF
* SYNCRIP
* VPS13B