KBG Natural History Study

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The KBG Foundation Natural History Study consists of a variety of online surveys that the patient (or legal caregiver) answers based on your answers in an initial questionnaire. For example, if you indicate you have hearing loss, you will be prompted to take a more detailed survey about hearing. You may do these at your own pace. You will have the opportunity to update information as time goes on. And you only have to answer the surveys you choose.

The Study is open to people with a confirmed diagnosis of KBG syndrome or their caregiver authorized to answer questions on the patient’s behalf. You will be asked to upload your genetic test report when you register.

In order to be diagnosed with KBG syndrome, you would have needed a genetic test. Your test result would be part of your medical records and is available to you as a patient. Your geneticist or other doctor that ordered the test should be able to provide you with the report (or go through the records request process of your medical facility.)

Yes. The study is powered by the Matrix platform, which collects, encrypts and stores data and complies with Health Insurance Portability and Accountability Act (HIPAA) and General Data Protection Regulation (GDPR) regulatory requirements.

It costs nothing more than time to participate. You do not have to complete everything all in one session.

First, you will be helping create the most in-depth cross-section of information about this genetic disorder to date. 

Also, you will have the ability to take advantage of the full Matrix platform, which has numerous consumer-focused features to help patients track medications, set appointment reminders, store their own medical records in a single location, and more. Click here to learn more about Matrix for patients.

Patients always own and have access to their own data; the KBG Foundation is the gatekeeper to anyone else who can use your data. Researchers wanting to use de-identified data must sign a Data Use Agreement.

You will create your own account when you register. Upon log-in, you will be asked to provide answers to the initial questionnaire.  You can also learn how to take advantage of other tools the Matrix platform offers.

Email us at research@kbgfoundation.com.