Recent successes of therapies aimed at replacing, blocking, or changing the reading of genes—referred to as gene therapy—have made real the prospect of improving outcomes for people with rare diseases. In September 2019, NINDS held a workshop entitled “Next Generation Strategies for Gene-Targeted Therapies of Central Nervous System Disorders” to brainstorm with scientists, pharmaceutical manufacturers, and patient advocates about the best ways of getting these cutting-edge treatments into the hands of doctors and scientists to help improve the lives of patients living with rare diseases.Continue reading “NINDS Aims to Address URGenT Need for Gene Therapies”
September is Pain Awareness Month. In recognition of this, NINDS Director Walter Koroshetz and National Institute on Drug Addiction (NIDA) Director Nora Volkow have written a blog post highlighting NIH’s efforts to foster research, education, and patient care.
Pain is a symptom, a condition, not a disease. But do not let this fool you. Pain is among the most common and most disabling conditions known. It can be acute (sudden in onset and relatively short-lived) or chronic (long-lasting). Acute pain, most often with a known cause, sometimes becomes chronic pain. Often, it is not known why the transition occurs or why the pain persists.
It is estimated that between 20 and 30% of people have been affected by pain that lasted at least 24 hours in the past 6 months. Pain can afflict anyone at any age. While scientists have learned a great deal about pain and have developed medications, devices, and techniques that counteract some of the steps in the pathway that leads to initiation, production, and perception of pain, many medications that are effective against pain are addicting and those that are not are ineffective against the most severe and most chronic painful conditions.Continue reading “Combating Pain and Preventing Addiction”
Given that the word “diverse” means “made up of many different kinds,” it has always seemed odd to me that we think of the process of diversification in one dimension only. Recent studies have suggested that not only the degree but also the nature of diversification within the biomedical workforce differs among race and ethnicity, gender, level of expertise, and programmatic career focus. There can be no single specific recipe for achieving equity and inclusion; it requires, rather, a living, evolving, and creative cookbook!Continue reading “Diversification of the Neuroscience Workforce: Not One Size Fits All”
So far in this blog, we have talked about two major components of NINDS: the Office of the Director, which oversees and supports everything NINDS does, and the extramural program, which supports research being done in labs throughout the United States and around the world. Here I will discuss a third component to NINDS—our own research program housed on the NIH campus in Bethesda, Md.
In many ways, the NINDS Intramural Research Program (IRP) is very much like a research center or the research component of a department at a university medical center elsewhere in the United States. There are principal investigators—doctors and scientists who run laboratories and research clinics that perform basic, translational, and clinical research. These labs also support experienced staff scientists and staff clinicians; post-doctoral fellows—scientists who have finished graduate school but are continuing their training; residents and fellows who are doctors getting more specialized training in neurology or neurosurgery; and graduate and post-baccalaureate students.Continue reading “Neuroscience on the NIH Campus and the NINDS Intramural Research Program”
The history of medicine, like so much of the history of everything human, is replete with examples of abuses of power (both physical and philosophical)—acts born of ignorance, stolen credit, and false credentials. One has only to recall the surgical methods developed by Dr. Marion Sims, an American physician, as he operated without anesthesia on enslaved Black women and the experiments conducted on the Tuskegee Airmen, Black military pilots who fought in World War II, from whom diagnoses were hidden and treatments were withheld all while considerable data were collected. So-called “studies” of many kinds conducted on specific ethnic, religious, or medically defined groups fill the annals of intra- and international affairs.
Since the Declaration of Helsinki, a statement of ethical principles for medical research involving human subjects adopted in 1964, we have truly come a long way. The ultimate aim and benchmarks of success were changes in international culture, the collective definition of common human decency, and proper conduct in regard to research on human subjects. You will note, however, that the practical road to that ideal began with regulations and policy; grassroots and committee-led enforcement of practice and reporting; and institutional and governmental oversight and enforcement of consequences for deficient practices.
But changing culture takes much longer. And rebuilding trust and establishing the kind of comfort level that allows people to speak out about important issues and to participate in a clinical trial or a research study takes even longer and requires human interaction on a personal level.
So, what has NINDS done to try to move the needle? How is NINDS making clear to people of color, and specifically Black people, that not only do their lives matter to us, their health, well-being, and voices as part of our NINDS family matter as well? Dr. Koroshetz, the NINDS director, has also published his thoughts in a new Director’s Message.Continue reading “We May Have Come So Far, But We Have Yet So Far To Go”