Introduction to the KCNQ2/3 database and patient registry:
The RIKEE KCNQ2/3 database, patient registry, and this website have been developed in order to provide a reliable, comprehensive, and well-organized information resource in support of clinical care, and basic, translational and clinical research. The database compiles published data as well as information provided directly by families after informed consent, and by physicians after families provide verbal consent for such disclosure.
How you can help?
If your patient with epilepsy and or a developmental disorder has been found to have a KCNQ2 or KCNQ3 variant, please inform the patient's parents or legal guardian of two ways to participate. They can contact us by email at firstname.lastname@example.org. We will provide information and seek their consent. For various reasons, some families may cloose not to participate directly but wish to support efforts to understand KCNQ2/3 related illnesses. If a parent gives the treating MD verbal consent, the provider can submit de-identified information to our study staff. We depend on the enthusiasm of providers and parent networks to tell their patients and contacts about the Registry and to encourage them to participate.
Please feel free to download and print our English or Spanish flyer to review and distribute.
Key Study details:
The database, registry, and website are being edited and maintained in the Departments of Neurology and Molecular and Human Genetics at Baylor College of Medicine. These efforts have been funded by the American Epilepsy Society, the Epilepsy Foundation (USA), and the Jack Pribaz Foundation. The Registry is the first KCNQ channel variant registry of its kind. It began enrolling in August 2014.
What about HIPAA?
Consistent with HIPAA guidelines, we have taken many steps to protect confidential information families and physicians provide. Each patient file is assigned a study code for research use. Consent documentation for enrollees and the study ID code key are kept in a paper file (not entered into any computer) in a locked room to which only research staff have access. No other study documents contain personal identifiers. When families decide to participate, information is entered into the study server computer system.and access to names and other identifiers of each patient are restricted to research staff for specific purposes that are explicit options on the consent form, namely recontact by study staff to (1) obtain additional clinical information, or to provide (2) information about new research including treatment trial opportunities.
Confidentiality is very important to our participants and we will be vigilant in upholding the privacy of each individual.
Still have questions about the Registry? Please vist our Frequently Asked Questions page, or feel free to contact us at email@example.com.
Participation information for clinicians
Last Updated: 12/11/2015