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:
- How many people with CS develop seizures and at what ages?
- How many people with CS take growth hormone and has it helped?
- 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.
You will need to agree to all of this information to participate.
General Project Information - READ ME FIRST
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:
- Send an email to the CSCDP administrators email@example.com
- Within 1-3 days, you should receive an Introductory email with your userid and a link to the consent documents.
- We have had some difficulty with emails coming through. Please make sure your email account allows emails from "firstname.lastname@example.org"
- If you do not receive your Introductory email within 3 days, please check your spam/trash folders. If you still do not have it, please contact us at email@example.com.
- Email the CSCDP administrators firstname.lastname@example.org
Want to change your options?
(reminders, stop participating)
- Go to participation options