Cri du Chat Research Roadmap

5p- syndrome is gaining interest with astute researchers around the world, because

1.     Rare but commonly rare- 5p- syndrome is the most common contiguous gene deletion disorder (Niebuhr, 1978)

2.     Targetable key genes- The key haploinsufficient genes are targetable.

3.     Haploinsufficient- It is a haploinsufficiency no insights from other haploinsufficiencies like Dravet syndrome or SYNGAP1 has will aid this 5p- syndrome research.

4.     Treating 5p- syndrome will have impact beyond the 5p- syndrome community. Our target genes impact Autism, Alzheimer’s, dementia and other neurologic & mental health disorders. Insights here could help broader communities.

5.     Established Infrastructure- The infrastructure for successful clinical trials either exists or are being established for 5p- syndrome, biomarkers and natural history study including access to a network of engaged clinicians and patients.

6.     We are a well-organized & passionate community who would do anything to help our kids.

Major 5p- Syndrome Publications (insert most recent 5p- articles here)

Shen, 2025 10.1002/advs.202415224

Nguyen, 2015 https://doi.org/10.1002/ajmg.c.31444

Mainardi, 2021 10.1186/1750-1172-1-33

Medina, 1999 https://doi.org/10.1006/geno.1999.6090

Overhauser, 1994  10.1093/hmg/3.2.247

Almeida, 2024 10.1186/s13104-024-06734-7

 5p- Syndrome Research Roadmap

A Cri du Chat Research Foundation developed a roadmap to ensure our resources are aligned, focused, coordinated.