Accelerate drug development in IBM

Important research records are trapped in hospitals across the country. As a result, drug and gene therapy researchers can’t access the information they need to advance treatments.

But as a patient, you can. Unlock your records and contribute them to research, privately and securely.

RDMD

Questions? Check out our FAQ

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By joining the IBM program, you will help advance new research. If you know other patients or families who may be interested, you can help by sharing this link.
Neo.life
Neo.life
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Village Global
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Xconomy
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LUX
LUX

Why join the IBM program

For the future

For the future

Help researchers get the information they need to advance development of new drug and gene therapies.

For the IBM community

For the IBM community

Jumpstart research and increase knowledge and understanding of IBM.

For you

For you

See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Empower research

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

Be part of research

Questions? Check out our FAQ

Our values &
principles.

1
Patients own their data

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.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

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.

4
Inclusiveness in the community

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.

5
Driving forward therapeutic development

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.

Who’s involved?

Jemima Albayda - Johns Hopkins Medicine
Jemima Albayda - Johns Hopkins Medicine
Thomas Lloyd - Johns Hopkins Medicine
Thomas Lloyd - Johns Hopkins Medicine
Myositis Support & Understanding Association
Myositis Support & Understanding Association
Cure IBM
Cure IBM

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.

  • Jumpstart
  • Accelerate
  • Insights

The IBM program is in the accelerate stage. When 100 patients join, we’ll reach our first significant research milestone.

Be part of research

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.

   

Biomarker Study

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.