Important: Questionnaires are translated in English, French, Dutch, German and Portuguese.
The rest of the website interface is in English and French only.
User = survey respondent
Agree to share the information in your possession
Specify the genetic disorders involved to complete the creation of your account - You will then be able to access the anonymized questionnaires from your personal space.
We propose two levels of registrationBasic registration: By registering, you manifest your interest and support to the project. You will receive by email the GenIDA newsletter (about twice a year). We will not share your email address with anyoneOrActive participant registration. You wish to be active in the GenIDA project by helping in the recruitment of families concerned by specific genes, syndromes or pathogenic CNVs and/or participate in data analysis for such genes/syndromes/CNVs. You will thus have privileged access to deidentified data before they are made generally accessible (statistics based on the multiple choice questions, including comorbidities and natural history, open text answers). For this registration level, you have to answer the starred items (optional for the basic registration).Optional: We may share your email address to other registered professionals sharing interest in the same genes/syndromes/CNVs if you consent to it here Y/N.NB rules about using GenIDA data in publications: they should be considered as personal/privileged communication and permission shall be sought (to jl mandel/florent colin firstname.lastname@example.org) prior to publication[MOU1] )
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If an activity is not in our list, please specify it in the field above.
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The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)
Example: if you are the sister, please select "Sister".
Genetic cause: please fill in at least one of the three proposed causes below
Either you or your affected relative carries a causal mutation in a gene (e.g. KANSL1, EHMT1, ANKRD11, etc.)...
If a gene is not in our list, or a second gene is also involved, please specify it in the field above.
... or another genetic defect like duplication/deletion, trisomy, translocation, imprinting defect, etc. (e.g. 17q21.31 deletion, trisomy21, etc.)...
If the genetic defect is not in our list, or a second one is also involved, please specify it in the field above.
... or is part of the French ValDEV project (Valproate/Depakine).
Example: if the captcha is "9 + 4", the answer is "13"
All fields with a star (*) are required.
Don't forget to specify the cause of your relative's disorder (gene / genetic defect / ValDEV project).