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!

Powered by the National Organization for Rare Disorders‘ IAMRARE® program, the MdDS Patient Registry will be the first longitudinal research study to collect MdDS-specific patient data. The more people who participate means more meaningful data. Discoveries made through this study can pave the way to advancements in additional research and better patient outcomes.

MdDS Patient Registry – Study Aims

The goal of the MdDS Patient Registry will be to help researchers, clinicians or industry partners learn more about MdDS. The information collected in the MdDS Patient Registry will be used to study MdDS with the following major goals:

  1. 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.
  2. 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.
  3. 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. 
  4. 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.
  5. Identify Participants for Research: Find people with MdDS who may want to join future research studies or clinical trials. 
Provide your email address, and we’ll notify you when the registry is ready for participation!

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Your Data, Your Impact

This study will offer you the opportunity to make a meaningful contribution toward improving the lives of those affected by MdDS. When you join, you’ll be asked to share information about your symptoms and overall MdDS experience. You may be wondering how sharing your information helps MdDS research. Or what happens to your data? Click or tap to reveal answers to your questions.

How will my data be collected?
Who can see my data?
How will my data be used?
Who can participate?
How easy is participation?
When can I start?
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

The registry may use terminology you’re not familiar with. Click or tap to expand/collapse the definitions.

Advisory Board
De-identified Data
Domain
Informed Consent
Institutional Review Board (IRB)
Longitudinal Study
Modifier
Natural History
Principal Investigator
Protected Health Information (PHI)
Remission
Research Study vs. Clinical Research or Study
Statistical Significance
Translational Research

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

MdDS Patient Registry MdDS Foundation 5:41 pm