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 health information from as many children diagnosed with SGS as possible, from all over the world, to help us understand this rare genetic condition better.
Health information gathered through the SGS registry is important because:
- It will help to educate families about how SGS will likely impact their child.
- It will help scientists to develop new treatments for SGS.
- It will help doctors to provide the best medical care for children with SGS.
How do I enroll into the SGS registry?
The SGS Foundation in partnership with Matrix and COMBINEDBrain, have created a customized health information portal for Schinzel-Giedion Syndrome (SGS) patients to help caregivers easily capture, track and share information related to medications, symptoms, activities, and electronic health records for their child.
Parents and carers of children with SGS from around the world can enroll online. Once enrolled, the health information you share will be de-identified to protect you and your child’s confidentiality and then entered into our secure health database.
The SGS Registry is currently available in English, Spanish, Italian, French, and German. We want to include as many of our SGS families around the world as possible in this exciting project, so we will continue to add more languages as these translations become available.
How do I enroll into the SGS registry?
The first step is to request access. You will be asked to provide caregiver information. Then, within 24 hours, you will receive a response that provides access to the portal.
To be eligible for enrolment, your child must have a diagnosis of Schinzel-Giedion Syndrome. If you have a genetic report for your child, you will be asked to upload this.
Participation in the SGS registry is entirely voluntary.
Why should I enroll my child?
With rare conditions like SGS, it is vital that we share information about our child’s genetic mutation, their symptoms, the different medications they take and how different treatments, surgeries and therapies have impacted them.
This information will enable researchers to discover patterns and clues that will then help doctors better understand and treat children born with SGS.
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.
Enroll today and be a part of our mission to improve understanding, accelerate research and develop new treatments for Schinzel-Giedion Syndrome.
