The SJIA & MAS Contact Registry is an online database, created and maintained by the Systemic JIA Foundation, to gather information from patients (and/or their caregivers) affected by SJIA (Systemic Juvenile Idiopathic Arthritis) / Adult Onset Still’s Disease & MAS (Macrophage Activation Syndrome).
- The SJIA & MAS Contact Registry maybe be used to inform patients & caregivers about:
- opportunities to participate in research & clinical trials
- discoveries about SJIA & MAS that may impact care decisions
- Aggregate data from the registry may be used to publish statistics about the incidence of SJIA, MAS, and complications like lung disease.
- The Systemic JIA Foundation will not use the registry for marketing or fundraising. If the forgoing policy ever changes, you will be notified.
- You may opt-out of the contact registry at any time by contacting us (firstname.lastname@example.org) and requesting to be removed.
- The registry form will take 5-10 minutes to complete.
Share your information
- You can choose to share your information with SJIA foundation staff, researchers and doctors.
- Your information will be stored in our secure database and kept confidential to the extent permitted by law.
Get information: We may send you information about
- Research studies and Clinical trials that you might be able to participate in.
- New findings about SJIA & MAS that might change care decisions.
Join the SJIA & MAS Contact Registry. Become a part of the search for a cure!
What information will be collected?
The SJIA & MAS Contact Registry will your contact information and basic information about your disease, symptoms and treatment. You can view the information you provide to the Registry in the email that you receive after you complete the form.
How will my information be used?
We collect information about your identity and your disease to connect you to relevant research studies and clinical trials. We only share de-identified data with researchers, patient advocacy groups.
If we learn about research studies or clinical trials that are relevant to you then we will contact you with that information.
Can I change my mind later?
You may withdraw from the Contact Registry at any time time by writing to us at email@example.com.
If you choose to withdraw, you will no longer be a participant in the SJIA & MAS Contact Registry. We will stop collecting new information about you, and will no longer share your information with researchers or patient advocacy groups.
Who do I contact if I have questions about the collection and storage of my information?
Please contact us at firstname.lastname@example.org if you have any questions about the collection and storage of your information.
Who is behind this registry
Organized by the Systemic JIA Foundation, 501(c)(3) non profit organization devoted to Systemic JIA. The foundation organizes conferences, conducts surveys, makes seed grants, working with researchers and parents to accelerate the search for a cure. The goal of this conference is to bring together families suffering from Systemic JIA & Stills Disease so they can learn from each other and experts. Such a meeting also given an opportunity for researchers to learn more about the disease and its complications.
What are the risks of joining the registry?
The only risk of joining the SJIA & MAS Contact Registry is risk to your privacy, similar to that encountered through everyday use of the internet.