We are excited to share our partnership with Citizen Platform with you all! We have joined many other rare disease groups that have been using Ciitizen to build high-quality natural history data in a fraction of the time. Researchers and pharmaceutical companies have already used the data to submit Investigational New Drug (IND) filings with the FDA and this will help us work toward this for Pitt Hopkins as well.

Registering takes only a few minutes, and the Rare Patient Network team will collect all your or your loved one’s medical records. You will receive full access to the records through your personal portal and can share them with whomever you choose. This natural history study doesn’t require any clinical visits. The data will be extracted from your existing medical records, de-identified for your privacy and protection and, with your consent, organized to share with researchers and pharmaceutical companies.

Some information that will be helpful:

1. Pitt Hopkins currently has 16 patients verified (meaning they have gone through the whole process and are enrolled). We need 60 in order for the pharmaceutical companies to really commit to moving trials forward for Pitt Hopkins. So please consider joining!!

2. Everything is very secure, with IRBs and HIPAA-compliant systems in place. More details on their privacy policy can be found here: https://www.ciitizen.com/privacy/

3. The reports that we get back as parents are VERY helpful. They pull all of your child’s health history into one place for you to access. Say goodbye to the paper binders!! If you go to a new doctor and want to share this information with them, you can easily do that as well! It also puts together this really cool timeline and summary report of their entire life’s health history. And all of this at NO COST to you.

4. The reason this information is so important is that it helps move research forward, as well as clinical trials, which is what we all want to see for our kids! All the information is de-identified before it is shared with any researcher, pharmaceutical company, etc.

If you would like to participate, simply go to this website https://www.ciitizen.com/rarenetwork/PHRF and get started. It doesn’t take long at all and the impact can be so helpful!