DATA Guardians Information

Please find below the NDA that has been signed by DATA Guardians:


This form constitutes formal notice that you are considered to be in possession of sensitive personal information, commencing at the time of December 5, 2019 in respect of SGN associated with “Syngap1 Worldmap”, (collectively 'Confidential Information'). 


You are reminded of your obligations of confidentiality to SGN and its members (Syngap1 patients, parents and guardians) and any obligations owed to the other parties involved in the project, as set out in any relevant confidentiality or non-disclosure agreement. You may only discuss Confidential Information on a 'need to know' basis with other individuals included on the register. 

The current list of recipients can be viewed on the Syngap Global Network register at any time. 


Please contact one of the editors of the Confidential Register if you wish to share the Confidential Information with someone not already included on the register. 


Before disclosing sensitive personal information to anyone not already on the Confidential Register you must ensure that:


-You have approval from the Editor of the Confidential Register;

-You have received conflicts clearance (if appropriate);

-You have established what the intended recipient 'needs to know'; and

-The relevant owner of the information has consented to sharing it in this manner and/or there is no confidentiality agreement in place which would prevent sharing the information in this manner.

Here is the list of current DATA Guardians who have signed Non Disclosure Agreements in relation to the data that would be share by patients, their parents or tutors:

Danielle Williams

Sebastien Laverriere

Virginie McNamar
Rebecca Kohlhepp