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Clinical Database Project (CSCDP)

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The CHARGE Syndrome Clinical Database Project (CSCDP) is an internet-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, and assist CS research by identifying people with specific issues and simplify participation in additional research studies.

To participate, please see the official Information Flyer and take a look at the Recruitment & Consent and HIPAA Privacy Documents. You will need to agree to all of this information to participate.

For more information, visit the Understanding the Survey Sections and FAQ.

Principal Investigator: Meg Hefner, MS, Saint Louis University School of Medicine

Who can do this? Any adult with CHARGE syndrome (CS)* or the parent/guardian of an individual with CS can enter data. If you/your child have been diagnosed with CS, we invite you to participate

What is this for? The purpose of this study is to create a comprehensive clinical database and registry of individuals with CS of all ages from all over the world. Information from this database will provide meaningful contributions to CS knowledge and research.

How will data be used? For CS research and to share with other CS researchers.

What sort of questions will be asked? There are more than 10 sections covering prenatal history to current hearing and vision.

How would I do it? Participation in this project involves entering data (mostly medical information) into a web-based questionnaire. There are opportunities to directly upload photographs and certain medical records in some sections.

How long will it take? Completing the entire questionnaire will take several hours. It can be done in multiple sittings. We may contact you periodically for updates.

What do I need? You must have email and internet access to participate in this project. You will need access to your/your child’s medical history. The study is in English only.

Will I get paid? No. Your participation is strictly voluntary.

I have more questions before I decide to participate. Email your questions to the CSCDP team at charge-survey@slu.edu, or contact Meg Hefner directly at meg.hefner@health.slu.edu.

Can I start participating right now? Yes! Click on this link or copy and paste it into your browser:

Thank you for your interest in this study.

Saint Louis University IRB #22507; Approved 6-11-13; Board #3
* If the individual with CS is over age 18:  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.  The adult with CHARGE may choose to designate someone else to enter their data.