MdDS Patient Registry

Imagine a dedicated system designed to gather information about individuals living with a particular disease, like cancer or diabetes, or even an uncommon condition like MdDS. Imagine the collected data being used by researchers and clinicians to better understand the disorder and see what treatments are actually working – and possibly change the future of patient care. That’s what a patient registry is and can do for you!

This global study will be open to anyone who meets the inclusion criteria (see below) for participation. There will be no cost to join this study.

MdDS Patient Registry – Study Aims

Powered by the National Organization for Rare Disorders‘ IAMRARE® data and research platform, the MdDS Patient Registry will be the first longitudinal research study to collect MdDS-specific patient data. The goal of the MdDS Registry will be to help researchers, clinicians or industry partners learn more about MdDS. The information collected in the MdDS Registry will be used to study MdDS with the following major goals:

Describe People with MdDS: Understand who develops MdDS and how symptoms can be different for each person. By tracking many individuals, we can better understand the typical course of MdDS, its various characteristics, and how it’s generally managed by clinicians.
Understand MdDS Over Time: Learn how MdDS develops, what it feels like, and how symptoms change longitudinally (over time). By following the same people over time, this registry can reveal how things change, or stay the same, for individuals.
Learn About Diagnosis and Treatment: Find out how MdDS is diagnosed, what treatments are available, and how people respond to them. A registry can show us how treatments perform in the real world, with all the complexities that come with it.
Improve Care for People with MdDS: Use what we learn to provide better support and treatment for those with MdDS. The rich data within a registry is a goldmine for researchers who are working to understand MdDS, develop new therapies, and spot important trends.
Identify Participants for Research: Find people with MdDS who may want to join future research studies or clinical trials.

The more people who participate means more meaningful data and faster answers. Discoveries made through this study can pave the way to advancements in additional research and better patient outcomes.

Provide your email address, and we’ll notify you when the registry is ready for participation!

By clicking Notify Me, you will be subscribed to our e-Newsletter. If you are already a subscriber, you are already set to be notified.

Your Data, Your Impact

With or without an official diagnosis, this study will offer you the opportunity to make a meaningful contribution toward improving the lives of those affected by MdDS. When it opens for enrollment, the MdDS Patient Registry will be a place to share your journey. As a longitudinal research study, it is designed to capture a patient’s unique historical data through surveys and questionnaires. Onset, symptoms, treatments tried, medical history, and more… the MdDS Registry will benefit from your data.

Are you wondering how sharing your information helps MdDS research? Or what happens to your data? Click or tap to reveal answers to your questions.

Frequently Asked Questions

How will my data be collected?

The registry uses easy-to-complete surveys and questionnaires which are online instruments. Data is collected through a secure web-based application (that can be accessed by computer, tablet or phone) developed by the National Organization for Rare Disorders, Inc. (NORD®). Study participants respond to questions grouped within a series of surveys developed per study standards and in collaboration with disease specific experts. Housed on the IAMRARE® data and research platform, industry-standard safeguards to protect your information and privacy are in place.

Who can see my data?

Rest assured that maximum security and privacy practices will be followed. Data may be provided to approved researchers. The goal is to provide these researchers with the minimum data necessary to accomplish their research study. Data shared with outside researchers will be de-identified [e.g., Protected health information (PHI) will be hidden] where possible. This means your identity is private and protected.

How will my data be used?

The information you share in the registry will be used by:
• Researchers: To study MdDS and enable the design of new research strategies to improve potential treatments.
• Clinicians: To improve care for people with MdDS.
• The MdDS Foundation: To advocate for awareness, research funding, and patient resources.
These groups work together with a single goal: to improve the lives of people living with MdDS.

Where will the data be stored?

NORD stores Sponsor and Participant Registry Data on NORD encrypted servers and/or encrypted servers of third-party vendors hosted in Canada. Regular back-up at commercially acceptable intervals is provided. These servers meet industry standards and are compliant with US and international regulations, including GDPR.

What is a Natural History Study?

A natural history study is a study designed to track the course of a disease over time. It includes people who have a specific medical condition or disease. It may also include those who are at risk of developing the condition/disease. This type of research identifies demographic, genetic, environmental and other information that may be common within the disease and its outcomes. A natural history study can also show the differences in symptoms and changes over time that are seen in different people with the same disease. Natural history studies often aim to find unknown similarities within the disease population. They have many potential uses such as patient care best practice development and clinical trial recruitment. Data for natural history studies are often collected via patient registries.

Who can participate? Inclusion Criteria

If you’ve experienced symptoms of MdDS, the perception of motion, for at least 30 days that is relieved when in passive motion (such as riding in a car), you will be able to enroll when the registry launches. An official diagnosis is not required. Study enrollees who are minors (less than 18 years old) may have a Legally Authorized Representative (LAR) to complete surveys and questionnaires on their behalf. Participants can contribute data from anywhere in the world. Participation is voluntary; You will not be paid for the information you provide.

How easy is participation?

Very. The main survey, MdDS Status, will collect answers about your symptoms, balance, dizziness, and quality of life. Each area of focus (or domain) is completed separately, and at your convenience. Supplementary questionnaires cover aspects like medical and family histories. They’re extremely easy to complete, and you can stop any time you like. The system will save your responses for you. Participants will be reminded to return to the registry periodically to update their information.

When can I start?

We are working toward launching the MdDS Patient Registry in 2026. To streamline your entry into the MdDS Registry, we recommend registering for the Living Rare Study now. Like the MdDS Registry will be, the National Organization of Rare Disorder’s Living Rare Study is hosted on the IAMRARE® platform. A single registration with the platform is all you need. From Albinism to Wolfram Syndrome, you’ll gain access to over 50 studies with one registration!

Do I have be officially diagnosed with MdDS?

A diagnosis is not required. Candidates meeting the following criteria will be able to enroll:

Perception of movement (rocking, bobbing, swaying, or gravitational pull) while stationary
Symptoms of perceived motion for at least 30 days
Relief of symptoms while in passive motion

Is there an IAMRARE app?

The IAMRARE mobile app is available in both the Apple and Google Play stores in the US and Canada.

Coming Soon — a visual guide to the study! You’ll see how the study is designed to flow and also discover benefits of participation.

Glossary of Terms

Developing the MdDS Registry has driven the establishment of much-needed standards and definitions. With new tools like the “remission” definition and our Symptom Severity Scale, we can ensure both reliable reporting and the collection of highly valuable data. Additionally, the registry may use terminology you’re not familiar with. Click or tap to expand/collapse the definitions.

Advisory Board

A Registry Advisory Board is a committee that may include scientists, doctors, and patient advocates. They oversee the conduct of the study. The board advises on the development of surveys and reviews combined registry data and the use of this registry. They will ensure proper evaluation of all research requests for use of the registry data. They will also review any protocol or confidentiality deviations and ensure that any such deviations are reported to the IRB.

De-identified Data

De-identification means personal data such as name, dates and address will be removed. Instead a randomly assigned identification code will be used.

Domain

Living with a chronic disorder can affect every aspect of your life, from how you move to how you feel emotionally. With the MdDS Patient Registry, researchers will study these effects in separate areas, or domains, including balance, dizziness, and quality of life. By measuring domains separately, we can get a clearer picture of how MdDS – a disorder of perceived motion — impacts individuals and find better ways to manage it.

Episode

When actively experiencing rocking, bobbing, swaying, and/or pulling, you are in an episode. If you go six full months with zero symptoms, the episode has ended. Although an episode ends when symptoms of perceived movement stop, the full six-month symptom-free period is needed to confirm that a true remission has been achieved.

Informed Consent Form

An ICF is a document that provides potential participants with key information about the registry. This document helps potential participants to make an informed decision whether to join or not. Information will include topics such as: the risks and benefits of the research project, use of data, and participant privacy. If they choose to join the study, participants are required to electronically sign the ICF. This indicates that they agree to the terms as described before entering data into the registry or responding to surveys. See also: Legally Authorized Representative

Institutional Review Board (IRB)

An IRB is a board formally designated by an institution or investigator to review, approve the initiation of, and conduct periodic review of research involving people. The primary purpose of such an assessment is to assure the protection of the rights and welfare of the participants in the study. This is also known as an Ethics Committee (EC) or Research Ethics Board (REB in Canada).

Legally Authorized Representative

An LAR is someone who is authorized under applicable law to consent and enter data in the registry on behalf of another individual. The LAR may be a parent, grandparent, spouse, caregiver, or guardian as long as they have the legal authority to grant consent on behalf of that individual. An LAR will sign up on the IAMRARE platform with a Caregiver account. When an LAR acts on behalf of a study participant, they are considered to be the reporter in the research.

Longitudinal Study

A type of study where researchers repeatedly collect data from the same group of individuals over an extended period of time. It follows the same participants throughout the study to analyze how things evolve over time. This allows researchers to observe and track changes and developments in variables like behaviors, health outcomes, or opinions across different points in time.

Modifier

Personal activities and environmental factors can influence MdDS symptoms, acting as modifiers that either increase or decrease the sensation of motion. The effect of these modifiers is unique to each individual. To discover common modifiers that exacerbate or alleviate symptoms, please visit the Symptoms page.

Natural History

The course a disease takes, over time (longitudinally), is its natural history. Collection of individual patient data, repeatedly over time, illustrates the progression of that individual patient’s condition. Collecting data about the progression of MdDS, across the MdDS community, is one of the most impactful and consequential contributions we can make in working towards the development of treatments and cures.

Principal Investigator

A principal investigator (PI) is the primary person responsible for the design and conduct of a research project or clinical trial. A co-investigator(s) may assist in the conduct of a research project.

Protected Health Information (PHI)

Protected health information (PHI) is information that may be used to identify an individual.

Remission

Patients with no perception of movement, sustained for at least six (6) months, are considered in remission.

Research Study vs. Clinical Research or Study

A research study aims to gain knowledge about a phenomenon, while clinical research aims to develop new treatments, diagnostics, or preventative measures by testing them in humans. Our Patient Registry is a research study designed to collect MdDS-specific patient data. For more detailed information on the study design, read this article.

Sponsor

The MdDS Foundation is the study sponsor. The study data are owned by the MdDS Foundation. The MdDS Foundation decides how and with whom to share the data. NORD staff will have access to the data for activities related to support and maintenance of the Platform and will collect Platform-wide participation statistics. The specifics will be outlined in your informed consent.

Statistical Significance

Researchers and clinicians need reliable and reproducible data. When data is collected from too small a sample, it is unstable because the margin for error is too great. For data to be statistically significant, certain thresholds must be met. Using our support group as a survey population, if 100 of the 5,000 active members completes a survey, the margin of error will be ~10%. If 1,000 of the 5,000 active members completes a survey, the margin of error will be less than 3%. Your participation in the patient registry can make a meaningful difference!

Translational Research

This type of research aims to bridge the gap between basic laboratory findings and clinical applications, essentially “translating” discoveries made in the lab into treatments or interventions that can directly benefit patients in a clinical setting. It can take research from the bench to the bedside to improve human health. Learn more about Research and Clinical Trials on the American Brain Foundation website.

Have questions about the IAMRARE® platform? This page provides an introduction the MdDS Patient Registry and gives definitions for terminology used with it. Comprehensive information about the IAMRARE data and research platform can be found on NORD®’s IAMRARE site.