Home / Blog / Research / Patient Registry / MdDS Patient Registry: Research Designed with You in Mind Our Blog I Am Empowered, Patient Registry 3.17.26 MdDS Patient Registry: Research Designed with You in Mind TL;DR What: A research study to help experts find treatments. Ease: Multiple choice questions—Save your progress and finish whenever you feel up to it. Benefits: See how your data compares to others and get alerted to clinical trials. Be Registry-Ready: Know Your Numbers! MdDS Sound Bite: Listen to a breakdown of this article! Your journey with Mal de Débarquement Syndrome is a vital piece of the puzzle. The MdDS Patient Registry is a research study, and it’s coming this summer! Developed in partnership with the National Organization for Rare Disorders (NORD), we’ve designed participation to be as effortless as possible—so we can give clinicians and industry partners data that can unlock the mysteries of MdDS. Easy & Accessible We understand that living with MdDS can make complex tasks feel overwhelming. That’s why the MdDS Patient Registry will use simple surveys with 🔘 radio buttons and ☑ check boxes—no typing or long-form writing will be required. No Perfection Required: Don’t worry if you can’t remember exact dates or every detail. The registry is designed to capture what you do know. You can save your progress and come back later with answers. Or simply give your best estimate—your contribution will still be incredibly valuable. You are free to stop and restart whenever it’s convenient for you. Easy as 1-2-3: The registry is built to track the natural history of MdDS over time with start and stop convenience. Your Data Can Drive Discovery Developed with the guidance of two expert advisory boards, the MdDS Registry will use a series of surveys to capture the full picture of your experience. By completing them, you can provide researchers with the specific data they need to explore potential treatments: The Baseline: The MdDS Status Cluster of surveys to establish your core experience. The Big Picture: Brief questionnaires such as diagnosis, treatments, and family history. The Impact: Researchers also want to know things that make your MdDS better or worse as well as about your balance & dizziness and Quality of Life. A Historical First: This will be the first registry to collect MdDS-specific longitudinal data (data tracked over time). Why Longitudinal Data? By retaking surveys periodically, you can help researchers see the “natural history” of MdDS—how it progresses and how symptoms change over time. Rather than just taking a snapshot, longitudinal data allows researchers to identify trends, trajectories, and cause-and-effect relationships. Individual patient data, collected repeatedly, is exactly what researchers are asking for! Your data in combination with data collected from others in the MdDS community will allow us to discover patterns, improve treatments, and establish better standards of care. We promise you, it’s easy! There is no writing required—simply tap or click to select the answers that best fit your journey. The registry will even remind you when it’s time to retake a survey, or to complete one that you saved to finish later. Why Join the Registry? Community Insights: See the “Big Picture” (e.g., how many others share your specific symptoms). Clinical Trial Alerts: Be among the first to know about new research opportunities. Better Care: Your data may help set new standards for how doctors treat MdDS. Ever wonder how many others share your journey? The MdDS Registry won’t be a “one-way” street for data; it will provide visual feedback. You will be able to see real-time graphs showing the combined data from those who answered the same questions. The more who contribute data, the faster and better the results! Sample Community Data View: This graph illustrates how an IAMRARE platform displays aggregate data. You can see how your answers align with the community while your personal information remains 100% private and de-identified. Want to Be Registry Ready NOW? Just Know Your Number for the month! Here’s how: Download the Symptom Severity Scale. Track your daily or weekly numbers using our new Symptom Tracker. While the full surveys aren’t quite ready, you can get a head start by using our Symptom Severity Scale to Know Your Number. Then use our new Symptom Tracker, your phone’s Notes, or a simple notebook, to keep a log—keep it simple! Your monthly average is all that’s needed. Tracking your symptoms now ensures you have crucial data needed to fuel new research the moment the MdDS Patient Registry opens. Remember, participating in the MdDS Patient Registry is simply one of the most impactful and consequential contributions you can make in working towards the development of treatments and cures. The more who join as soon as it launches, and the more who commit to contributing data, the faster and better we’ll be able to share meaningful data. We aim to announce the MdDS Patient Registry launch via e-newsletter soon! Enter your email address and Click Notify Me to be subscribed. Email address: Leave this field empty if you're human: 🍀 Thank you for reading to the end. For a chance to win a zebra-themed gift such as a NORD® zebra stress ball, click/tap the zebra. 🦓 Related posts: NEW Severity Scale Simplifies MdDS Symptom Tracking Could Regular Tracking Be Your Key to Remission?
Thank you and that makes total sense about protecting participant privacy in registries which has been highly problematic for people with ultra rare conditions like occipital bone syndrome. I doubt my sister with MdDS will want to participate in the registry so wonder if I can provide her data with her consent. Reply
The Registry platform does allow one account to manage multiple participants, but there are important guidelines regarding consent: * If she is a capable adult: She must create her own account to personally sign the Informed Consent Form. You can certainly act as her “scribe” to help with the typing and navigation if her symptoms make screen time difficult. * If you are her Legally Authorized Representative (LAR): If she cannot legally consent for herself and you have guardianship, you can add her as a participant under your account and complete surveys on her behalf. The Bottom Line: To ensure her data is valid for research, she must be the one to provide consent if she is legally able to do so. If the idea of the registry feels overwhelming, let her know that she can complete the surveys at her own pace. The system saves progress so she can do just a few minutes at a time, whenever she feels up to it. Reply
Ready to be Registry Ready? A key part of driving research is providing clinicians with clear, accurate data. You can start preparing right now by using the MdDS Symptom Severity Scale to “know your numbers.” Tracking your symptoms now means you’ll have a monthly average ready to report the moment the study opens. Let’s turn our lived experiences into the evidence-based data researchers are asking for! Your Goal for This Month: Know Your Numbers: 1. Download the Symptom Severity Scale. 2. Track your daily or weekly numbers. 3. Have your monthly average ready for our Summer launch. Has anyone already started tracking their “numbers”? What’s your favorite way to stay consistent? Reply
We’re thrilled you’re looking forward to it! To get ready for the MdDS Registry launch, we recommend using our news Symptom Severity Scale to “know your numbers.” By tracking your symptoms now, you’ll have a clear monthly average ready to report the moment the Registry opens. Download the scale from the Resources page of this website. Reply
Since I’m in remission most of the time and am reasonably confident this remission will stick, it would be difficult for me to know my numbers although I could do this retrospectively, if that would help. Reply
That is a great position to be in! Data from those in remission is incredibly valuable to researchers because it helps them understand the full “natural history” of MdDS. While the Registry is designed for current tracking, your retrospective “numbers” from when you were symptomatic would still provide an important baseline. Even if you remain in remission, your ongoing “zero” reports will help establish what long-term recovery looks like. Reply
Thank you and I am looking forward to participating. Will the data be broken down by country/state? In the UK each devolved nation has a slightly different approach to implementing our rare conditions strategies so it would be very helpful if we can use our data for Parliamentary Receptions etc. I don’t know what a radio button is but guess I can figure it out 🙂 Reply
You make an excellent point regarding advocacy, Polly. To protect participant privacy in the rare disease community, de-identified aggregate data—such as geographic breakdowns—will only be shared when a group reaches a minimum of 10 individuals. This is to ensure no single person can be inadvertently identified. We will share as much geographic data as possible as the Registry grows and participation thresholds are met. A radio button is the empty circle that you click or tap on to make a selection. When selected, the circle is filled with a dot, like this 🔘. Check boxes are squares that are filled with a check mark when clicked or tapped, like this ☑️. Reply
