Join Our Registry

If you are a parent or carer of a child with Schinzel-Giedion Syndrome, please enroll in our registry to help advance understanding of this rare genetic disorder.

In this photo: Jude

Join Our Registry

If you are a parent or carer of a child with Schinzel-Giedion Syndrome, please enroll in our registry to help advance understanding of this rare genetic disorder.

Join Our Registry for Schinzel-Giedion Syndrome (SGS)!

We are inviting you to join the first-ever global registry for SGS patients. The goal of the registry is to combine medical data from patients with SGS so that researchers can discover patterns and clues that may help doctors better understand and treat SGS.

Parents and carers of children with SGS from around the world can enrol online. Once enrolled, medical data is collected, de-identified to protect patient confidentiality and entered into a database. Participation in the SGS registry is entirely voluntary. We hope that the registry will provide insights about SGS and possible treatments so that medical care of SGS patients will be improved in the future.

How do I enroll into the SGS registry?

If you are a parent or carer of a child with SGS, help us learn more about SGS and enroll in the SGS registry today!

To be eligible for enrolment, patients must have had a genetic confirmation of a diagnosis of a SETBP1 mutation consistent with SGS and must sign an informed consent form online.

Why should I enroll my child?

When a large number of SGS patients enrol, there is a greater chance that more information about SGS can be learned, doctors may be better equipped to provide effective treatment for their patients, and more progress can be made toward improving the lives of future children born with SGS.

We recognise that sharing your child’s health information can be a difficult choice, and we want you to feel comfortable with your decision to enrol in the SGS registry. Participation in the SGS registry is completely voluntary.

Can I enroll my child if they have passed away?

Yes. Even if your child has passed away from SGS, we would invite you to enroll in the global SGS patient registry. Your child’s information and experiences are very important and valuable to our SGS community.

Accelerating research and treatment for Schinzel-Giedion Syndrome.

SGS Registry – Register Your Interest

Full name of Parent/Carer
First Last
Name of Child
First Last
Child's Date of Birth
Date Format: MM slash DD slash YYYY
Child's Status
- Alive
- Deceased
Contact Email
Contact Phone Number
Country of Residence
Country
Consent
This form collects your name, email and phone number so that we can contact you with information about how to join the SGS Registry.
To be eligible for enrolment, patients must have genetic confirmation of a diagnosis of a SETBP1 mutation consistent with SGS.
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