Being a FOXG1 parent can be extremely overwhelming, especially when it comes to managing medical care.
In the rare disease world, it seems like many families have to become experts on their child’s diagnosis, so that they can teach their doctors and professionals about their children. If you’re lucky, you end up at a healthcare institution that has maybe a handful of kids with the same diagnosis, and you may have to go through several medical institutions before you get there. With advancing technology, wouldn’t it be great if that clinical data could be compiled for you, stored for review at any time, and shared easily with your physicians?
Ciitizen has a free service to help patients do exactly that!
What is Ciitizen?
Ciitizen is a free service that helps patients get more out of their healthcare records, by giving you access to all of your child’s medical records in one easy place. The best part, they do all the work for you.
For the FOXG1 platform, it only takes 10 minutes to sign up and then the team at Ciitizen takes it from there. Once everything is compiled, you just log in and see your child’s medical records at any time and you can share them with whomever you choose.
However, they don’t stop there--while parents benefit immediately from this service--Ciitizen has created an efficient process to extract information from the medical records they’ve already collected and continue to collect in order to produce a regulatory-grade natural history study for our community.
A New Kind of Natural History Study
Ciitizen’s machine learning and expert team analyze the digitized, de-identified patient data collected for all the FOXG1 patients within the Ciitizen platform. Ciitizen employs a team of experts in HIPPA law and medical coding, genetic counselors, software developers, and scientists to apply world-standard terminologies (like SNOMED codes, RXNORM codes, etc) to FOXG1 compiled data.
Traditional Natural Histories are essential tools for clinical trials, but they are prohibitively expensive, very time consuming, and they often require patients to resubmit to testing they have already undergone.
Ciitizen makes it possible to quickly and inexpensively utilize existing medical information to create a retrospective natural history to help better understand our children. These findings are available to families and shared with academic researchers and consented non-profits at no cost. And patients do not need to travel to academic sites.
The FOXG1 Ciitizen platform can save us years in getting treatments for FOXG1!
How This Supports Clinical Trials
To test a treatment, we need actual physical measures that show progress over a range of patients with different ages, genetic backgrounds, severities, and medications. Often companies developing treatments in rare diseases like FOXG1 need to establish and fund lengthy natural history studies in order to prove efficacy. This is costly, and it is not easy on patients.
In order to keep Ciitizen free for patients, Ciitizen charges commercial entities a license fee. This fee is lower than if these commercial entities established their own Natural History Study. It's also faster since the Ciitizen data is ready to go but traditional studies will take at least a year. Even better, Ciitizen shares a percentage of any licensing fee back to the foundations working on the FOXG1 community, so we can continue investing in our community!
Who can join?
The goal is to include at least 400 FOXG1 patients over three years. We are adding patients in cohorts. We launched the first cohort of 50 US patients in January. The second cohort will open to 50 more patients and this time it is open to other countries as long as the patient’s medical records are in english. As part of our grant, we are adding validated medical translators to include more languages later this year.
How do I sign up?
Right now there is a Waitlist. We recommend you join this ASAP! We will be emailing everyone on the waitlist to make sure you join before it’s full.
The Ciitizen portal for FOXG1 patients will open on May 12th, 2021.
There will only be 50 spots open. Get ready to grab one of those 50 spots by making sure you have the following read to roll:
We will walk you through the process!
We will host webinars for different regions: The US, UK & Canada, Austrailia and NZ, and Taiwan
Please join the webinar for your region so that we can walk you through the process and help guide you on important details about accessing your medical records.
The webinar links will be the FOXG1 Research Parents Connect group and will be emailed to everyone on the waitlist..
JOIN THE REGISTRY FIRST!
If you have not done so already, it’s imperative that patients have a registry profile before being added to the Ciitizen natural History Study.
Please go to the Patient Data Center and make sure your child’s dashboard is set up with his/her genetics report uploaded.
“Measurable improvements for our Kids”
A final note: when a pharmaceutical or biotech company wants to develop a treatment for a rare disease and they are choosing which rare disease group to invest in, they will want to know that the community is easy to work with. They will need to know that if they ask anything of our FOXG1 parents that can measurably improve our children’s lives, that we will be engaged, and actively involved.
This is why singing up for the NHS is the first step to show that we are the rare disorder they should choose!
We’re truly in this together!
Reach out to [email protected] with any questions.