Participate in Research

 

 

As of today, the RIKEE Project's KCNQ2 related epilepsy database includes of two key components: a Patient Registry, and an online KCNQ2 Variant Database.

1. Patient Registry

-for clinical and lab based research

-accessible to scientists with IRB approved

     research plans

 

2. Online KCNQ2 Variant Database (This website)

-for research and education

-accessible online (www.rikee.org) to public

Purpose of the KCNQ2-related registry and website

KCNQ2-related illness range from mild to severe. Because these illnesses are uncommon and awareness of the conditions has been low, long intervals have occurred prior to diagnosis.  Even after a diagnosis, many cases have not been reported in the medical literature. 

 

Lack of knowledge about the range of existing KCNQ2 gene variants and related illnesses continues to make assessment and care of newly diagnosed individuals more difficult.  By enrolling your child in the registry, you will be contributing to efforts by doctors, scientists, and family-led groups to overcome these difficulties, understand KCNQ2 related illnesses better, and develop new treatments.  Although your willingness to join these efforts would be greatly appreciated, participation is completely voluntary.

 

About the electronic patient registry:

If you register, your file will first be assigned a research code number.  All information will then be added in the registry without mentioning your name or location.  Your information will be grouped with other patient and family information so that researchers and doctors can better understand patterns of KCNQ2 related illness.  There results will be discussed in scientific articles and conferences, and for planning new research, including new treatment development.  Also, we have created this website, making curated, basic information on the known KCNQ2 variants available to all.  Although each variant published will subsequently be listed on the website, you will be given the option to allow your child’s or your family’s variant to be included in this website after registration and before publication.

 

Your identity will remain confidential:

It is important that your feel comfortable when enrolling in the registry.  Prior to enrollment, we will answer any questions you may have.  If you give permission, we will also include you on lists of families we may contact to get updates about your child’s or to notify you about new research including treatment trials. 

 

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