Research Opportunities
** Help us collect data on DYRK1A Syndrome **
Join Rare-X
** Help us know more about DYRK1A Syndrome **
Join these research projects
Tiger Study
The University of Washington’s Autism Center is performing a study to better understand the medical, learning, and behavioral features of individuals with genetic changes in the following genes; ADNP, ANK2, ARID1B, CHD1, CHD2, CHD8, CTNNB1, CTTNBP2, DSCAM, DYRK1A, FOXP1, GRIN2B, KDM6B, LARP4B, MBD5, MED13L, NCKAP1, PARD3B, POGZ, PTEN, SCN2A, SETBP1, SETD2, STXBP1, TBL1XR1, TBR1, TCF7L2, WAC, WDFY3, WDR33, ZMYND11.
Participants must be 4 years or older and have a change in one of these genes.
Families who are interested in learning more, or would like to participate, can contact the study team:
Phone: 206-685-8770
Email: Conor Miles; conormgm@uw.edu or General Inquiries; rablab@uw.edu
Website: https://depts.washington.edu/rablab/research-studies-2/research-studies/tiger/
The Simons Searchlight is an online community and research initiative. They provide a platform for families and researchers to connect and better understand of specific genes such as; ACTL6B, ADNP, AHDC1, ANK2, ANKRD11, ARID1B, ASH1L, ASXL3, BCL11A, CHAMP1, CHD2, CHD8, CSNK2A1, CTBP1, CTNNB1, CUL3, DDX3X, DNMT3A, DSCAM, DST, DYRK1A, FOXP1, GRIN2A, GRIN2B, HIVEP2, HNRNPH2, KAT6A, KATNAL2, KDM5B, KDM6B, KMT2C, KMT2E, KMT5B, MBD5, MED13L, PACS1, PBRM1, POGZ, PPP2R5D, PTCHD1, PTEN, PURA, REST, SCN2A, SETBP1, SETD5, SMARCA4, SMARCC1, SMARCC2, STXBP1, SYNGAP1 & TBR1. The list of genes they focus on are expanding regularly.
To learn more about this initiative contact the team
Email: coordinator@simonssearchlight.org
Phone: 855-329-5638
Fax: 570-214-7327
Website: https://www.simonssearchlight.org
GenIDA
Genetics of Intellectual Disabilities & Autism is a social network that aims at collecting data on the natural history, medical complications, behavioral troubles and responses to treatments for patients affected by genetically determined intellectual disabilities (ID) and/or autism spectrum disorders (ASD), which includes changes in DYRK1A. They will do this by gathering information from patients/families and professionals.
Visit genida.unistra.fr to learn more.