Ciitizen Research Opportunity
Dup15q Alliance has been presented with a new opportunity provided by Invitae, a leading medical genetics company, through their health data platform, Ciitzen. This platform will not only rapidly provide you YEARS’ worth of your child’s medical data, but it will also provide researchers and pharmaceutical companies de-identified data with your consent.
What is Ciitizen?
Ciitizen is an online technology platform that helps patients get more out of their health records while providing the opportunity to advance research for disorders like dup15q syndrome.
How does Ciitizen work?
With your consent, Ciitizen will request your child’s medical records on your behalf and load them to their profile. Clinical data will be organized and summarized, free of charge. Caregivers retain full control of the patient’s health records. This gives parents years worth of records in a easy to follow format.
How does Ciitizen advance research?
With your consent, clinicians, researchers and biopharma can access deidentified data to aid in research through Ciitizen’s databank of medical and survey data collected from children and adults living with rare disorders, to be used for future research needs in collaboration with academic and pharmaceutical researchers (the “Databank”). This data could also be linked back to the Dup15q LADDER Database
What are the benefits of joining?
We know that having this opportunity along with asking families to sign up with Ladder can create confusion. This is a separate opportunity to accelerate research and pharmaceutical interest. This platform is unique because it will allow you to have access to your data and share the data with your future providers.
By sharing your child’s de-identified medical data, you may help:
- researchers understand how dup15q syndrome affects your loved one and how it changes over time
- pharmaceutical industries select key measures for future clinical trials
- design better clinical trials
- accelerate research
What is the benefit for your family to join?
- Big impact on research with minimum efforts
- Keep your child’s medical records in a centralized location. Keeping all your medical records in one place makes it easier for you to:
- get second opinions
- share your records with other ongoing studies
- coordinate with caregivers
- share the records with your providers
Joining takes less than 10 minutes
All you have to do to join this free platform is:
- Go to ciitizen.com/dup15q
- Provide your photo ID
- Provide your child’s birth certificate or guardianship paper
- Provide a list of healthcare providers – neurologists, hospitals, specialists etc. We know this one alone may seem daunting. When you provide the providers name, and contact information, Invitae does the rest. They reach out and get years’ worth of records that you will later be able to login to and share with your providers or view for your child’s needs.
Need help getting signed up?
Contact justin.barreto@invitae.com.
Mobile: 317-832-3072
Justin is our main point of contact for families who need help signing up.
Ciitizen Community
Ciitizen is trusted by the world’s leading authorities in research and patient advocacy organizations.
Ciitizen believes change will be driven by the individual alongside the organizations who tirelessly support and advocate for them. We are proud to partner with a network of Patient Advocacy Organizations who believe in the power of patients to drive change.
It takes an entire community to cure the world’s worst diseases, and that starts with enabling everyone to access and control their medical records.
Our main goal is to attract pharmaceutical companies to use the Ciitizen Natural History Study in discussions with the FDA, with the goal that our patients can use it in lieu of a placebo arm in clinical trials.
Ciitizen is key for our doctors and researchers who are working hard to see what the spectrum of our disease and the natural history of the disease looks like.
