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CHARGE Research

Clinical Database Project


      CSCDP Header




Meg Hefner and her team would like to invite you to participate in the CHARGE Syndrome Clinical Database Project (CSCDP).

This project is being conducted at Saint Louis University (SLU) and has been endorsed by the CHARGE Syndrome Foundation.

A little about the project:

The CSCDP is an Internet web-based questionnaire designed to collect clinical data on individuals with CHARGE syndrome (CS).

Our aims are to:

- Collect information on people with CS of all ages from all over the world

- Use the collected data to understand more about CS and how it affects different individuals.  For example, we can use the database

to answer questions like:

- Find new features that have not yet been recognized as part of CS

- Follow individuals with CS over time to see what problems come up at different ages

- Assist CS research by identifying people with specific issues and simplify participation in additional research studies.

Sound interesting?  For more information, please see the official Information Flyer and take a look at the Recruitment and Consent and HIPAA Privacy Documents

You will need to agree to all of this information to participate.


General Project Information - READ ME FIRST 

Recruitment & Consent Information

Privacy (HIPAA) Information

Section Descriptions - What is in the survey?


What if my son or daughter with CS is an adult?

If you are the guardian, you can consent and enter information on that adult with CS.  If the person with CS is an independent adult,

he or she must consent to participation and provide HIPAA authorization.  That adult with CHARGE may, on their own, designate

someone else to enter their data.

Yes, I want to participate:




Want to change your options?

 (reminders, stop participating)