Ciitizen launches SCN8A Program: Helping Patients Control Their Medical Records and Drive Research Forward

---

Head over to the portal to sign up here: 
​http://bit.ly/TCSFciitizen

SIGN UP NOW

Being a parent to an SCN8A warrior can be overwhelming.  In the rare disease world, it seems like many families have to become experts on the diagnosis, so that they can train and teach their medical teams and professionals. If you’re lucky, you end up at a healthcare institution that has maybe 3 or 4 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 sherpa 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. It only takes 10 minutes to sign up and then the team at Ciitizen takes it from there. Once everything is compiled, you can pull up and see the medical records at any time and share them with whomever you choose.

However, they don’t stop there--while patients benefit immediately from this service--Ciitizen has created an efficient process to extract information from the medical records we’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 analyzes the digitized, de-identified patient data collected for all the SCN8A 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 SCN8A 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 to take tests they have likely already received in the course of their treatment.

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 SCN8A 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 SCN8A community, so we can continue investing in our community.

How do I sign up?

The Ciitizen portal for SCN8A patients will open on April 1st, 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:

• A list of providers and institutions where your child has been seen
• Genetic report
• Your driver's license
• Child's birth certificate

The Cute Syndrome Foundation will provide instruction for signing up with Ciitizen in the support group and via our Meaningful Change Series. Our team will be available to help our community establish their accounts.

Head over to the portal to sign up here: 
​http://bit.ly/TCSFciitizen

SIGN UP NOW