MdDS Registry Launch COUNTDOWN

What Do You Need to Know?

• Open Enrollment begins OCTOBER 30.

• Your Story Matters

We’re just days away from the official launch of the MdDS Patient Registry, a groundbreaking initiative to advance research and improve care for those living with MdDS. It is designed to make it easy for you to contribute to research, while ensuring your data is secure and your participation is meaningful.

Your Story Matters

When you share your experiences, you’re not just providing data—you’re giving researchers the details they need to make meaningful discoveries. Here’s how your participation in the MdDS Registry contributes.

Help Researchers: Your insights can reveal patterns in how MdDS changes over time, what triggers symptoms, and which treatments are effective.
Shape Treatments: By sharing how MdDS affects your daily life, you help researchers develop therapies that target the areas where you need the most support.
Strengthen the Community’s Voice: Your input shows where more research or resources are needed, ensuring the community’s needs are met.

Together, our stories can make a difference.

The MdDS Registry can be a testament to the strength and resilience of the MdDS community, where every participant contributes to a brighter future for everyone affected by this condition. We hope you’ll join us on [INSERT DATE].

Participating is a powerful way to contribute to the future of MdDS research.

“This new study has tremendous promise to build strong partnerships and engage the patient community to address current knowledge gaps for MdDS. NORD is thrilled to be a part of driving research and innovation-based outcomes for all the families in the MdDS community.” ~ Janine Lewis, Director of Research Operations, NORD.

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How to Prepare? Be Registry Ready NOW.

Here’s how you can get ready for the launch: Know Your Numbers and Keep a Log!

1. Download and print the MdDS Symptom Severity Scale.

2. Download and print the MdDS Symptom Log and start tracking your symptoms today.

What to Expect on Launch Day?

Once the Registry opens, here’s how you can get started:

Visit the Registry
- We’ll provide a link in announcements on Facebook and Instagram, and by newsletter.
Sign the Informed Consent Form
- This form explains how your data will be used and your rights as a participant. The process is simple and user-friendly.
Start Taking Surveys
- The first survey will ask about your symptoms, experiences, and how MdDS affects your life. It’s designed to be quick and easy. Supplemental questionnaires ask questions about aspects like medical and family histories.
Stop-and-Start Convenience
- The system will remind you to return for updates periodically, helping researchers track changes over time.

Addressing Your Concerns

We know you may have questions about joining the MdDS Registry. Here are a few common ones:

Q: How long does it take to complete the surveys?
A: Each survey takes just a few minutes, and you can complete them at your own pace.

Q: Is my information secure?
A: Absolutely. The registry follows strict privacy and security standards, including anonymizing your data.

Q: Can I withdraw if I change my mind?
A: Yes, participation is entirely voluntary, and you can withdraw at any time.

? Learn more about the MdDS Patient Registry: https://mddsfoundation.org/mdds-patient-registry

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