Bladder cancer is the fourth most common cancer in men. When detected early, it is considered highly treatable.1 In 2021, about 83,000 people were expected to be diagnosed with bladder cancer (64,280 in men and 19,450 in women).2 Ninety percent of these cancers are urothelial carcinomas (UC), or cancers of the lining of the urinary tract. Unfortunately, UC may also recur.
In a discussion of melanoma on Inspire, a caregiver said to fellow members: The doctors and drug companies are making tremendous strides in the treatment of this terrible disease!! Her message of hope resonates strongly today.
Are we moving beyond Levodopa for Parkinson’s Disease? By Kathleen Hoffman, PhD, MSPH In November, the American Academy of Neurologists (AAN) updated their 2002 guidelines for treatment of Parkinson’s Disease (PD) with dopaminergic drugs (drugs that improve dopamine release). The preeminent drug for treatment of early Parkinson’s, levodopa, creates the dopamine neurotransmitter that people with Parkinson’s progressively lack. Despite the fact that levodopa was approved to treat Parkinson’s over fifty years ago, the updated guidelines reaffirm that levodopa combined with carbidopa is still the best first-line treatment for motor symptoms of early PD when compared with the [...]
Beating back chronic myelogenous leukemia By Kathleen Hoffman, PhD, MSPH A patient feels fine, but a routine complete blood count (CBC) test reveals an unusually high white blood cell count. High white blood cell counts may result from many conditions, but if it’s accompanied by other signs such as high or low platelet counts and anemia, further tests may reveal that the patient has Chronic Myelogenous Leukemia, or CML. CML is a blood cancer that starts in the bone marrow and results in an overgrowth of damaged white blood cells. Most people’s diagnosis begins after a routine [...]
"Still alive and kicking" - The importance of sickle cell disease clinical trial awareness By Kathleen Hoffman, PhD, MSPH Sickle cell disease (SCD) is a rare disease: an inherited and incurable blood disorder that causes red blood cells to be misshapen and rigid, affecting their ability to provide oxygen to tissues. Their shape and rigidity cause random blood vessel inflammation and blockages anywhere in the body, with associated organ damage. Six million people suffer from SCD worldwide and many more carry the trait that causes it.1 It prevails in people whose genetics include a connection with sub-Saharan [...]
How Clinical Trial Diversity Saved a Life By Kathleen Hoffman, PhD, MSPH “My pastor warned me not to participate in a clinical trial,” Karen Barrios said. Going against his advice, Ms. Barrios joined a clinical trial that she believes saved her life.1 Ms. Barrios shared her story as a panelist during the webinar, “Enhancing Engagement of Communities of Color in Covid-19 Research,” held on January 11 by the Center for Community Health Education Research and Service in Boston. The purpose of this webinar series is to address challenges facing ethnic minorities in accessing healthcare and participating in [...]
Top 5 Ways Online Patient Communities Can Reduce the Cost of Clinical Trials By Jeff Terkowitz Trying to rein in clinical trial costs? You’re not alone. A JAMA research study of 138 trials for novel therapeutics found that clinical trial costs ranged from less than $5 million to $346.8 million, with a cluster of trials coming in between $12-33 million -- and that was for trials in 2015-2016.1 Let’s agree on two things: It hasn’t gotten any cheaper, and finding qualified participants is still an issue. Here are five ways online patient communities can reduce the costs [...]
Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire By Jeff Terkowitz Did you know that 80 percent of Inspire’s members agreed to receive information from Inspire about clinical trials? That’s about 1.6 million members with conditions in oncology, rare diseases, autoimmune disorders and chronic conditions who want to know if and when trials affecting their condition might be recruiting. Pfizer needed to find rare patients with genetic resilience to lung cancer. On Sept 23, the Breakthrough Staff at Pfizer wrote, Normally, discovering a small cohort or one or two families who meet such criteria might [...]
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials By Kathleen Hoffman, PhD, MSPH On a recent Pharma Talk Radio podcast called, The Impact of COVID-19 on Clinical Trials: Where are We? And Where are We Going?, three subject matter experts discussed how they see COVID-19 impacting the future of clinical trial research. What needs to change?1 The experts were Ray Dorsey, MD, the David M. Levy Professor of Neurology and Director of the Center for Health & Technology at the University of Rochester; Matt Kibby, President and Principal of BBK Worldwide; and Craig [...]