Surveying interest in research opportunities at upcoming meetings of rare genetic developmental disorders
The Simons Foundation Autism Research Initiative (SFARI) is soliciting your interest in research opportunities at upcoming family meetings of individuals with rare genetic developmental disorders. SFARI does not organize these meetings but we can help to facilitate research by connecting investigators with families. SFARI may also be able to help with logistical issues, advice, and coordination with existing efforts or related projects.
We are currently aware of the following family meetings that will take place in 2019: 16p11.2 copy number variant and ASXL3, CHAMP1, DYRK1A, HNRNPH2, PPP2R5D, SCN2A and STXBP1 single gene-based disorders. We encourage investigators to complete the form even if you are not interested in studying these particular genetic disorders; additional family meetings will likely be organized, especially if interesting research opportunities exist.
And please note that all responses will be kept confidential. Names and email addresses are requested in case SFARI staff would like to follow-up with you to discuss further details.
Thank you in advance for your time in completing this form.
1) First Name
2) Last Name
3) Email Address
5) Which CNVs/genes are you interested in studying (check all that apply)?
6) Which type of experiments/biospecimens are you interested in performing/collecting (check all that apply)?
Sensory measurements (e.g. auditory, visual responses)
Biospecimens (eg. saliva, blood, fibroblasts) for DNA sequencing, iPSC generation
7) Can your experiment/biospecimen collection be performed at the meeting (e.g. in a conference or hotel room) or will it require that participants visit a clinical site (or research lab) at a later date?
Study can be performed at the meeting
Study would require a visit to a clinical site/laboratory
8) Have you or your lab performed similar studies before?
9) How many subjects do you anticipate needing?
10) Does your protocol require a professional diagnosis of autism?
11) Which participants would you like to include in your study (check all that apply)?
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