Waitlist is Open for Next NHS Cohort
The new digital machine-learning Natural History Study is well underway! We onboarded the first cohort of 50 patients in January and we will be onboarding the next cohort of 50 patients later this month!
In case you didn’t see the news, this is the groundbreaking new approach to Natural History Studies that we spent two years developing and received a $500K grant from the Chan Zuckerberg Initiative to launch!
As Mike Graglia from SynGAP Research Fund says “Chan Zuckerberg have the best scientists on Earth. They have every rare disease group begging to be best friends with them. They don’t give half a million dollar grants unless they’re impressed.”
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?
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 provide the platform to collect all of your children's medical records for you and keep them in one easy online home for you.
In the US, you can easily find your doctors/medical providers right on the platform, just click and automatically add them to your profile!
All you have to do is consent and Ciitizen does the tedious part by calling all the medical records departments and gathering all your records!
In other countries, we will provide guidance on collecting all your records so Ciitizen can upload them to your child’s account.
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 opening the second cohort on May 12th to the next 50 patients, but this time it will be outside the US as long as all your records are in English.
To be one of the next 50 you must:
Have all/most medical records in English (we will provide certified medical translators int he future)
Have completed the FOXG1 Patient Registry / Patient Data Center Profile, with your child’s genetics report uploaded.
If both of the above criteria are met, please join the Waitlist here: www.ciitizen.com/foxg1
So.. what does this mean about the in-person Natural History Study that some FOXG1 patients have participated in?
The data from that study is valuable and this new Digital NHS is a complement to it. In fact, two of the KOL’s on our digital NHS are also involved with the in-person study, Eric Marsh from the Orphan Disease Center and Heather Olson for Harvard and Boston Children’s Hospital.
With this new NHS:
Patients do not need to travel anywhere!
This NHS is global; patients from all over the world will have access.
Data is completely easily accessible to your child’s care team and researchers.
This is specifically for FOXG1 syndrome and the number of patients that will be included and the amount of data it will provide about the Natural History of FOXG1 is unparalleled when it comes to FDA-readiness for clinical trials.