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 [...]
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 [...]
Clinical trial recruitment challenges
Clinical trial recruitment challenges Recruiting participants for clinical trials is fraught with challenges. Factors such as study complexity, logistical concerns (e.g., patient lives two hours from the study site), and patients’ lack of awareness of clinical trials can contribute to significant study delays or cancellations. Inspire communities can be a viable source of clinical trial participants who are well-educated on their conditions. Sponsors seeking participants for clinical [...]
Prostate Cancer: A Couple’s Disease
Prostate Cancer: "A Couple's Disease" By Kathleen Hoffman, PhD, MSPH Prostate cancer impacts not just the physical health of the individual but also their emotional and social health. A study of patients and their partners compared satisfaction with treatment, worry about cancer, and the consequences of treatment on their relationship. Twenty-five percent said that their personal activities were negatively impacted by prostate cancer diagnosis and treatment [...]
Genomic Testing for HR+/HER2- Breast Cancer
Genomic Testing for HR+/HER2- Breast Cancer Breast cancer (BC) is the most common cancer diagnosed globally, with 330,000 new cases predicted in the United States during 2022. But those numbers don’t account for patients who were previously diagnosed and experience disease recurrence. Experts are particularly concerned with disease recurrence in patients with hormone receptor-positive/HER2-negative (HR+/HER2-) BC. This subtype of BC accounts for approximately 70% of all [...]
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 [...]
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 [...]
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. [...]
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 [...]
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 [...]