Registration

Process to create an account

1. User information

User = survey respondent

2. Consent

Agree to share the information in your possession

3. Affected person information

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.

Who are you? *

Other, specify *

We propose two levels of registration
Basic 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 anyone
Or
Active 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 genida@igbmc.fr) prior to publication[MOU1] )

Choose your registration level? *

Family name

First name

Country *

Choose your organization type? *

Choose status of your organization? *

Choose degree? *

Other degree

If a degree is not in our list, please specify it in the field above.

Professional activity related to GENIDA? *

Other activities

If an activity is not in our list, please specify it in the field above.

1. Account creation

Username *

Required. 150 characters or fewer. Letters, digits and @/./+/-/_ only.

Email *

Email confirmation *

Password *

Password confirmation *

2. Consent

I have read the information note and give my consent to participate.

3. Adding an Affected Relative

The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)

Nickname

Birth year *

Birth month *

Gender *

Country *

Familial relationship *

Example: if you are the sister, please select "Sister".

Other relationship *

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.)...

Gene

Other gene

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.)...

Genetic Defect

Other Genetic Defect

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).

Please check this box if part of ValDEV project

The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)

Nickname

Birth year *

Birth month *

Gender *

Country *

Familial relationship *

Example: if you are the sister, please select "Sister".

Other relationship *

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.)...

Gene

Other gene

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.)...

Genetic Defect

Other Genetic Defect

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).

Please check this box if part of ValDEV project

The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)

Nickname

Birth year *

Birth month *

Gender *

Country *

Familial relationship *

Example: if you are the sister, please select "Sister".

Other relationship *

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.)...

Gene

Other gene

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.)...

Genetic Defect

Other Genetic Defect

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).

Please check this box if part of ValDEV project

The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)

Nickname

Birth year *

Birth month *

Gender *

Country *

Familial relationship *

Example: if you are the sister, please select "Sister".

Other relationship *

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.)...

Gene

Other gene

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.)...

Genetic Defect

Other Genetic Defect

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).

Please check this box if part of ValDEV project

The person affected (you or someone close to you) by a genetic disorder or part of the ValDEV project (Valproate/Depakine)

Nickname

Birth year *

Birth month *

Gender *

Country *

Familial relationship *

Example: if you are the sister, please select "Sister".

Other relationship *

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.)...

Gene

Other gene

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.)...

Genetic Defect

Other Genetic Defect

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).

Please check this box if part of ValDEV project

Captcha *

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).