The new digital Natural History Study Ciitizen platform supported by CZI
We hope you saw this incredible news that we received a nearly $500K grant from the Chan Zuckerberg Initiative to launch a new digital Natural History Study!
You might have some questions like, why is this so important for me? How can this help our kids? What’s different about this NHS? How can I join it?
I must start by saying that this platform will eventually be available to all FOXG1 patients, but we are launching the first cohort with only 50 patients in the US. We will open this up to another 50 patients every four months and we will expand to more countries until we are global.
Let’s start with how this will make your life easier!
Imagine having all your medical records in one easy place?! Now you will.
We have partnered with a company called Ciitizen, that will collect all of your children's medical records for you and keep them in one easy online home for you. All you have to do is consent and they do the tedious part by calling all the medical records departments and gathering all your records.
Think of the benefits of this..
Many doctors we see have never heard of FOXG1 before. They should see the full picture as much as possible. Now, you will be able to easily share all your records with any doctor you see. If one doctor wants to see your latest MRI, or blood work, or GI doctor’s report, it will be there in your Ciitizen/FOXG1 account. Managing your child’s care will be easier!
On top of that, as we move towards developing treatments for FOXG1 kids, researchers will need detailed patient data to develop treatments. Ciitizen uses machine learning to extract and analyze all the data to find the precise clinical end-points for clinical trials. And if a company that wants to develop a treatment for us needs this data, don’t worry it’s all anonymized. And you, the parent, own all the raw data!
How do I participate?
We’re launching the Ciitizen platform on December 7th with only 50 patients in the United States.
To be one of the first 50 you must:
Live in the United States.
Have completed the FOXG1 Patient Registry, with your child’s genetics report uploaded.
If both of the above criteria are met, please join the Waitlist here: www.ciitizen.com/foxg1
Again, all FOXG1 patients will be included over the course of the next year.
What you’ll need when we launch:
A photo of your patient’s birth certificate uploaded to your computer.
Your driver license (to upload via mobile).
A list of the locations your patient has received medical care.
Please REGISTER HERE to join us on December 7th at 2pm EST for a webinar that will walk the first 50 US patients through the on-boarding process and answer all questions.
You might be wondering, what does this mean about the in-person Natural History Study that FOXG1 patients have participated in?
The data from that study is valuable and this new Digital NHS is a complement to it. With this new NHS:
Patients do not need to travel anywhere!
This NHS is global; all patients in the world will have access.
Data is completely easily accessible to your child’s care team and researcher.
We’ve already launched this NHS Ciitizen project with the SynGAP community with our partner the SynGAP Research Fund and parents are telling us how much this Ciitizen platform is helping them!
SynGAP will be onboarding their second cohort of 50 patients soon. We learned a lot about how the process is going for parents from the first SynGap 50 and it’s helped Ciitizen to make improvements before we launch! Here is a discussion with some member of the SynGAP that will give you great insight into the process.
Any questions, please email [email protected]