The FPIES Global Patient Registry: Getting to Know Connect

The FPIES Global Patient Registry Getting to Know CONNECT

Part 3 of 3 in Registry Series

What defines the CONNECT program?

Patient Crossroads' CONNECT program is, “a registry platform, which allows patients around the world to join others in reporting their own experience of disease.”-- From the Patient Crossroads Advocacy Brochure

According to the Patient Crossroads website, “PatientCrossroads is a place where all kinds of people can share and access medical data to hasten the search for cures. Our programs enable anyone—from individual patients to global research organizations—to collect and share disease data in a way that's controlled, transparent and centered on patients' best interests. . .  The CONNECT registry enables disease communities, regardless of size and shape, to collect and share de-identified patient data in a consistent and transparent manner.”

For more, about de-identified data and Patient Crossroads' strict confidentiality policies, read here: https://www.patientcrossroads.com/advocacyfaq.html

What do I need to know about the latest updates to the Connect program?

Recently, participants received the ability to upload genetic testing results and growth charts to the database. It is essential to remember that if you elect to upload any information to the portal, you MUST remove any identifying information from the documents, such as birth date, medical record numbers, name, and so on. Printing out a copy of each electronic document, blacklining identifying information and then re-scanning to the computer for upload may be a potential way to approach this process. Uploading information is optional and does not affect participation in the surveys. For any questions about this process, please contact us at contact@thefpiesfoundation.org. For more about additional updates from CONNECT, please visit: https://www.patientcrossroads.com/

What other organizations utilize the registry process through patient crossroads CONNECT program?

◦     The Alzheimer's Association

◦     The American Cancer Society

◦     Parent Project Muscular Dystrophy

◦     Government Organizations: NIH Office of Rare Diseases Research and RD-Connect (FP7 European Union Programme)

For more, read here: https://www.patientcrossroads.com/advocacy-research-clients.html and here: https://www.patientcrossroads.com/industry-government-clients.html

What will be coming up in the future?

◦     Over the next year, regular survey releases will include FPIES-specific, IRB-backed and “research-minded” surveys in combination with surveys targeting general health topics. We will further develop a strong foundation of data, impact existing and future research, and strengthen the collective voice of the FPIES community.

◦     The ability to become aware of clinical trials or other studies, posted in the portal by researchers or other medical industry professionals

How can I register today?

1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page

2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”

3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!

4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES

5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!

6.      For additional support, contact us at contact@thefpiesfoundation.org

Additional Resources:

•  http://www.ncbi.nlm.nih.gov/books/NBK49448/
•  www.patientcrossroads.com
• http://www.hopkinsmedicine.org/institutional_review_board/hipaa_research/de_identified_data.html

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

This post was written by the Executive Board of The FPIES Foundation