There’s a Problem We Need to Talk About.
Breakthroughs like the successful mapping of the human genome and treatments for HIV occurred when scientists, researchers and others collaborated. They shared what was working and, just as importantly, what didn't work. Having many smart people from different disciplines, comparing data, and understanding what it is saying, simply pulls us closer to cures.
There are an estimated 5,000-6,000 active clinical trials of investigational therapies conducted globally at any given time. But, the majority of the data gathered can't be leveraged for learnings because it's not collected in a standard, sharable format. If you're thinking, 'I never knew that,' you're not alone. Most people assume clinical trial data is already shared or don't realize how critical sharing is to finding cures.
Right now, we could possibly have the cure for cancer, but the answers may be buried in report notebooks somewhere. Combining and comparing data gets us the story we need to unlock cures. To do this, we must first format data to enable sharing. Data sharing can significantly shorten the time gap between clinical research results and better clinical care decisions. Collecting and sharing data means smarter research: new knowledge that can lead to life-saving therapies instead of repeating earlier, dead-end mistakes.
And, even though we live in the electronic age, the way of disseminating clinical trial findings is still stuck in moveable type groove - publication in medical journals. In fact, the majority of clinical trials don't get published. When they do, it's often two to three years after the findings were made. If you're a patient with a serious illness, or a mother, father, brother, sister, son or daughter of one, that's two years too long.
How to Unlock Cures
CDISC is a global nonprofit with a worldwide team of volunteer experts across the medical community, working to get data talking. CDISC is the patients' advocate, leading the charge for data synchronization. We've developed data standards that are the gold standards worldwide, adopted and used in more than 90 countries. But, we need to get all scientists and researchers to use CDISC standards to improve the life of their research, and others'.
It takes our teams and volunteers time and money to create best practices for sharing data in each disease area. Right now, the work we do is generously funded by our members, the CDISC education program, and federal and private foundation grants.
To date, CDISC has developed and is in the process of developing clinical data standards for 25 disease areas.
- Bi-polar Disorder
- Breast Cancer
- Cardio Vascular Imaging
- Chronic Hepatitis C
- Diabetic Kidney Disease
- General Anxiety Disorder
- Major Depressive Disorder
- Multiple Sclerosis
- Parkinson’s Disease
- Polycystic Kidney Disease
- Prostate Cancer
- QT Studies
- Rheumatoid Arthritis
- Traumatic Brain Injury
There are many, many more left to do. If you want to learn more about how we do this work, click here. We are rolling up our sleeves. But we need your help.
You are key to this effort. And, you're here. You've already educated yourself on the fundamentals of why standardizing and sharing clinical trial data is so important to advancing cures. Here are some other ways you can help this initiative.
Become an Unlock Cures Campaigner
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