DATA

New Quarterly Data Reports – July 2025

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

The Simons Searchlight Team

Our July 2025 Quarterly Reports feature updated insights from Simons Searchlight participants across 73 genetic communities—including one new group! (full list below).

About This Report

These reports are based on medical history information generously shared by families and include data presented in four key areas:

Age Ranges
Developmental and Behavioral Conditions
Neurological Conditions
Gastrointestinal Conditions

They also include community participation progress numbers, reflecting how families are helping move research forward.

Thank you to all the families who continue to share their experiences with Simons Searchlight. Your ongoing participation is essential—it helps researchers deepen their understanding of rare genetic conditions and ultimately improve care and support for individuals and families around the world.

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
* 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

1 new group:

* FBXO11