Why join the IBM program
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the IBM community
Jumpstart research and increase knowledge and understanding of IBM.
See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.
How it works
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Empower research
Track your contribution to research projects and, based on your records, find out if you qualify for new clinical trials based on your records
Our values &
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.
“Patients shouldn’t be bystanders in drug development.”
Four years ago I was diagnosed with a rare disease called NF2. I realized that, like most rare diseases, there were no adequate treatments available. I asked myself what I personally could do to help drive drug development forward.
I learned that the needed information is out there, but trapped in hospitals. We started RDMD to give patients the ability to unlock that information, and have a personal impact on drug development in their condition.
– Onno, Founder of RDMD
Our work with IBM research
Inclusion body myositis (IBM) is an inflammatory muscle disease. It is the most common muscle disease in patients over the age of 50. Patients with IBM experience muscle weakness and muscle wasting that slowly gets worse over time. The thigh muscles (quadriceps) and muscles in the fingers, wrists, and forearms are often most affected. Many patients also have difficulties swallowing. Over time, patients lose their mobility and have trouble completing everyday activities. There is currently no cure for IBM.
RDMD drives research on your condition as well as research on general health and wellness. These are the current research projects we aim to complete in order to increase our understanding of inclusion body myositis and drive drug development and clinical trials.
IBM Diagnostic Journey
IBM can be tricky to diagnose, and many patients have symptoms for years before receiving a diagnosis. By studying information from the medical chart, researchers can identify ways to diagnose IBM patients early. This will help patients receive care as soon as possible and help preserve quality of life.
IBM Treatment Outcomes
While there are currently no approved treatments for IBM, sometimes patients try treatments that are typically used for other inflammatory muscle diseases. Learning more about why certain treatments are tried and how well they worked for each patient will help researchers understand what types of therapies might work for IBM in the future.
Some patients develop IBM earlier than average, while others develop it late in life. Some have very severe IBM, while others have more mild symptoms. Why is this? By studying clinical information from the medical record and genetic data from patients, researchers might be able to pinpoint why there is so much variability in this disease and identify new ways to diagnose and treat IBM patients.
Hackathon & Discovery
The cause of IBM is not fully understood. Analyzing the genetic data of patients will help researchers understand possible genetic causes of IBM and help them to pinpoint different ways to treat the disease.