clinical trials

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...
By Israel Rocha, CEO, Doctors Hospital at Renaissance September 15 marks the beginning of Hispanic Heritage Month, a time to pay tribute to the generations of Hispanics who have enriched America’€™s history. It’€™s also an important time to consider how this community can be further empowered to make important contributions, particularly in the future of health care. Research demonstrates that certain diseases disproportionately impact the Hispanic community, including diabetes, liver cancer, cervical cancer and HIV/AIDS. Clinical trials help researchers find better ways to diagnose, prevent and treat these diseases and others. However, Hispanics are significantly underrepresented in...
Dear Research Advocate: My colleagues at Research!America have shared the role as author of our weekly letter during my recent sabbatical. My thanks to them for providing timely and actionable information to our wide network. As I am ’€œre-entering’€ the Washington space, I have been struck by (1) the significantly worse condition of the roads ’€” potholes everywhere, and now even sinkholes in DC! I’€™ve been in several global capitals this spring, including in less-developed countries, and DC doesn’€™t look good in comparison. Via recent domestic travels, I can attest to the poor condition of our roads nationwide, taking a toll on vehicles and our economy, while eroding public confidence...
Is the patient voice adequately represented in the drug development process? The situation has improved but the patient community is not yet recognized as a co-equal in drug development or regulatory review according to Marc Boutin, executive vice president and chief operating officer at the National Health Council , a panelist at a BIO International Convention session on Wednesday. ’€œWe scare you,’€ declares Boutin who says there is an adversarial connection between patients, regulators and industry but the relationship has evolved over the last decade. Patient advocates have developed strategies to amplify their voice and demand access, providing the data and evidence to help transform...
Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The New York Times in response to article, ’€œ Labs Are Told to Start Including a Neglected Variable: Females ’€ (May 14, 2014) In addressing gender bias in biomedical and clinical research, it’€™s also important to close gaps in clinical trial participation among minorities to understand how different segments of the population respond to various treatments. When asked if they or someone in their family had ever participated in a trial, only 17 percent of Hispanics, 15 percent of African-Americans and 11 percent of Asian-Americans said yes in polling commissioned by Research!America, a nonprofit...

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Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco