clinical trials

Dear Research Advocate: Dr. Kelvin Droegemeier, the Director of the White House Office of Science and Technology Policy, gave his first public address at the AAAS Annual Meeting last Friday. He discussed the importance of taking stock of the entire research and development enterprise, in order to provide a clear picture of U.S. capabilities in a global context that features other nations “nipping at our heels,” and then, drawing on this assessment — as well as the enduring values of our nation — to plan for the future in ways we haven’t seen since the Vannevar Bush report, The Endless Frontier , appeared after WWII. Droegemeier also emphasized the importance of strengthening partnerships...
Thirty million people in the United States are living with a rare disease and less than five percent of existing rare diseases have an approved treatment option . At Horizon Pharma, we are driven by a personal commitment to our patients to collaborate and innovate to close the innovation gap in rare disease. Conversations such as Research!America’s National Health Research Forum, which discussed the challenge of unmet medical needs , are vital in highlighting areas where cross-sector collaboration will enable us to find treatment options faster. Sitting alongside my fellow panelists, it was clear that while the challenges of unmet needs persist, our shared commitment will drive forward new...
Ella Murray is a happy, inquisitive elementary school student. However, because she was born without collagen factor VII, she suffers from a disease called epidermolysis bullosa (EB). This causes her to develop blisters all over her body, and she has to endure 3 hours of bandage changes multiple times a week. There are currently no therapies for EB, in part due to low prevalence of the disease and low enrollment in clinical trials. Joe Murray, Ella’s dad, told her story and called on researchers to inform communities about existing clinical trials during the Coalition for Clinical Trials Awareness panel discussion on child inclusion in clinical trials held in Washington, D.C. on May 1. This...
When was the last time you stopped to think about your heart? If you can’t remember, it’s probably because it’s been a while. Many of us try to follow a healthy diet and exercise, if time permits, but it’s difficult to make your heart a priority if you don’t know how. Only 55 percent of women actually know that heart disease is their number one killer. Too many women are not aware of the prevalence, risk factors, symptoms, and ability to control their heart health. In fact, a new study released in the journal Circulation on Feb. 20 underscores the gender differences in symptoms of heart attacks for women under 55. The misinterpretation of symptoms puts these younger women at a greater risk...
The “House of Hope,” also known as Building 10, the National Institutes of Health (NIH) Clinical Center, offers patients with limited treatment options the opportunity to participate in experimental clinical trials. The Discovery Channel has filmed an in-depth look into how medical discovery takes place at the Center. With the consent of thousands of staff members and patients, the resulting documentary First in Human , narrated by actor Jim Parsons, will air in a three-part series August 10, 17, and 24 at 9:00PM ET/PT on Discovery. This unprecedented access to ongoing research invites the public to learn more about the clinical trial experience. In a recent survey commissioned by Research!...
Imagine a world in which researchers can accurately measure a person’s risk of developing a wide range of diseases and then provide them with individualized methods of prevention, treatment and care. That world is what the National Institutes of Health (NIH)’s All of Us Research Program is striving to create. All of Us seeks to enroll one million or more volunteers whose biological samples, along with lifestyle and health information, will be analyzed to give researchers better insights into the biological, environmental and behavioral factors that lead to disease. “So much of what we’ve done in medicine over the years has not really taken into account individual differences,” said Dr...
An overwhelming majority (86%) of Americans say discussions about clinical trials should be a part of standard of care, according to the latest national public opinion survey commissioned by Research!America. The most recent survey found 37% of Americans say they would ‘very likely’ participate in a clinical trial if their doctor recommended, an 11% increase from 2013 but a strong majority (74%) say neither their doctor nor other health care professional has ever talked to them about medical research. “The option to participate in a clinical trial, when appropriate, should be a routine part of the health care encounter and ACRO will continue to work with Research!America and others to...
Less than 20% of African-Americans, Hispanics and Asians in the U.S. say they or a family member have ever participated in clinical trials, according to a survey commissioned by Research!America. This lack of inclusion of minority patients can negatively impact the quality of care provided to these patients and ultimately contribute to health disparities. Oftentimes, much of the data supporting approval of new drugs in America is based on clinical trials in non-U.S. populations that poorly reflect American diversity. The lack of U.S. data is, in large part, due to the “difficulty” in recruiting American patients to clinical trials, and represents a barrier to precision medicine. Project...
In the development phase, scientists conduct translational research using clinical trials and other research paradigms to refine and apply the knowledge gained through basic research to develop lifesaving treatments. We hope the final Cures package modernizes clinical trials and increases participant diversity, encourages the development of new antibiotics, incentivizes research into treatments for rare diseases and diseases afflicting children, breaks down data silos, invests in regulatory science and incorporates patient perspectives into the research and regulatory process. Take action! Join our Twitter chat on Wednesday, August 10 at 1:00 pm EST with the Association of Clinical Research...
Nine years ago, Rebecca went to the emergency room with appendicitis-like pains. CT scans revealed that she had a tumor the size of a grapefruit sitting on her ovary. She was diagnosed with late-stage ovarian cancer, which has a five-year survival rate of 39 percent. “It was like a big baseball bat to the stomach when you find out you have cancer. The fear of the unknown is intense,” recalls Rebecca. “You think, is life over.” Finding a trial After receiving her diagnosis, Rebecca had surgery and chemotherapy, yet cancer cells remained in her body. Up to that point, Rebecca had heard of clinical trials but didn’t know much about them. Based on her doctor’s recommendation, she decided to...

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Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor