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Help CDISC Foster Smarter Research to Unlock Cures

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Raised by 1 person in 371 days
About Help CDISC Foster Smarter Research to Unlock Cures
There’s a Problem We Need to Talk About. Clinical Trial Data. It is either not shared, or shared in ways that do not support learning. Why? Because many times the data is collected in a hodge podge of formats that won't allow it to talk. This practice of "siloed research" is a disease in itself, leading to redundancies and dead ends, and the loss of valuable time and billions of dollars. Most tragically, when data doesn't talk, we lose our patients. 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. 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. Alzheimer’s Asthma Bi-polar Disorder Breast Cancer Cardiovascular Cardio Vascular Imaging Chronic Hepatitis C Colorectal Cancer COPD Diabetes Diabetic Kidney Disease Dyslipidemia General Anxiety Disorder Influenza Lung Cancer Major Depressive Disorder Multiple Sclerosis Pain Parkinson’s Disease Polycystic Kidney Disease Prostate Cancer QT Studies Rheumatoid Arthritis Schizophrenia Traumatic Brain Injury Tuberculosis Virology 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.
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Created July 14, 2017
Nicole Harmon
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