Research reveals interstitial cystitis triggers and frustrations

Research reveals interstitial cystitis triggers and frustrations The Interstitial Cystitis Association (ICA) estimates that as many as 8 million women and 4 million men in America live with interstitial cystitis, also known as bladder pain syndrome or IC/BPS. Various treatment pathways exist, but they are not guaranteed to work for all individuals that are living with the condition. From the community: “I get lower stomach pain when my bladder is filling up. Urgency as well. I can’t hold on otherwise it’s painful. Very bad stinging and burning when I urinate. I have these symptoms almost every day, [...]

Taking patient market research to the next level with PatientJourney+

Taking patient market research to the next level with PatientJourney+ The Inspire community is the largest repository of fully consented patient-created health content on the internet. By participating, Inspire members support one another through their health journeys, and often help to accelerate medical breakthroughs. Posts created within Inspire’s disease-specific communities highlight patient and caregiver needs, concerns, and thought processes. They offer a window into the authentic patient and caregiver perspective for pharmaceutical companies and clinical research organizations, and provide critical guidance for clinical, commercial, and public health initiatives. Many members choose to participate in client sponsored research [...]

Optimizing the Patient Perspective

Optimizing the Patient Perspective As medicine has evolved, so has the role of patients in their medical care. Today’s patients are more active and involved. They have questions and seek answers — from family and friends, medical professionals, online communities, social media, and yes, Dr. Google. Identifying and responding to patients’ questions and concerns about their diagnoses and care plans can go a long way toward instilling confidence in their treatments. Increasingly we find that when it comes to the development and introduction of new drugs and medical interventions, it’s important to factor in the patient [...]

Jul 2022By |Patient Communities, Patient Insights|Comments Off on Optimizing the Patient Perspective

New Treatments for Migraines Sufferers

New Treatments for Migraines Sufferers An estimated 39 million Americans experience migraines — that’s more than 1 in 10 people. People of all ages, including children, can develop this disabling neurological condition. They experience recurring intense throbbing or pulsing head pain, sometimes accompanied by nausea, an aura, and light and sound sensitivities. From the community: “I have had migraines all my life. I have learned to live with and deal with many of them but every so often there are the ones that don't respond to anything or are significantly disabling. I often have them for [...]

Jun 2022By |Patient Communities, Patient Insights|Comments Off on New Treatments for Migraines Sufferers

Bladder cancer: What is a survivor?

Bladder cancer: What is a survivor? By Kathleen Hoffman, PhD, MSPH 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. For example, consider that about 50% of all bladder cancers are discovered while the cancer is only in the inner layer of the bladder wall [...]

Melanoma a “fake cancer”? — Public perception and research strides

Melanoma a “fake cancer”? — Public perception and research strides By Kathleen Hoffman, PhD, MSPH 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. Unfortunately, misconceptions about this cancer linger among the general population. One newly diagnosed patient on Inspire described their confusion: I was recently diagnosed with stage 3C...I honestly always thought melanoma was “fake” cancer, because you just cut it off, right? The fact that people didn’t associate [...]

Are we moving beyond Levodopa for Parkinson’s Disease?

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

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

"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 [...]

New classes of psoriatic arthritis drugs in clinical trials show promise

New classes of psoriatic arthritis drugs in clinical trials show promise By Kathleen Hoffman, PhD, MSPH Psoriatic Arthritis (PsA) is an inflammatory autoimmune disease affecting approximately one to two percent of the population. While psoriasis causes red and scaly patches on the skin, PsA creates mild to severe pain and swelling of any joint. About 5 to 30 percent of patients with psoriasis eventually develop PsA, and 85 percent of people with PsA have psoriasis as a comorbidity. Because there is no cure, treatment is focused on symptom management.1,2,3 That is the high-level view. At the experiential [...]