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 trials, interviews and focus groups have benefited from our community members’ participation and perspectives, and many have shared their experiences with their Inspire community. [...]

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 new cases. The initial outlook for HR+/HER2- is promising — more than 90% of people get diagnosed in early, non-metastatic stages (stages I-III). But even though experts continue to advance [...]

Jul 2022By |Clinical Trial Awareness Recruitment, Clinical Trials|Comments Off on Genomic Testing for HR+/HER2- Breast Cancer

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers By Kathleen Hoffman, PhD, MSPH Since the FDA approved the first targeted treatment for NSCLC in 2003, treatment decisions for NSCLC are increasingly made based on individual genomics.1,2  There are now 20 distinct biomarkers that serve as identification points differentiating cancer cells from healthy cells and distinguishing one expression of cancer from another. Science has progressed from identifying tumor cells on a slide to genetic and biochemical identification of NSCLC’s driving agents. Pharma companies are developing and improving increasingly targeted treatments.3 The science is also revealing just [...]

New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers

New Treatments Create Buzz Among Patients with Prostate Cancer and their Caregivers By Kathleen Hoffman, PhD MSPH Prostate cancer is highly treatable in its early stages, much less so once it has metastasized, where the five-year survival rate is below 30%. In search of more treatment options, a patient with advanced prostate cancer wrote on Inspire: I was diagnosed with prostate cancer in [date]. Have done virtually every procedure including the de Vinci surgery (cancer had gotten outside into my lymph nodes, so prostate was not removed), radiation, hormone treatments, and chemo therapy. Periodic bone scans showed the [...]

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers By Kathleen Hoffman, PhD, MSPH The word “Earth” doesn’t reflect the complexity and diversity of the planet. Similarly, the term “lung cancer” only identifies the location of the cancer. There are two general categories, non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC), differentiated by cell size, characteristics, treatments and prognosis. Genetic research continues to differentiate lung cancers at a molecular level, revealing subtypes within those categories, creating opportunities for increasingly targeted therapies. For example, since eight driver mutations have been [...]

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you are exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge. Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to [...]

More Good News about Treating Multiple Myeloma

More Good News about Treating Multiple Myeloma By Kathleen Hoffman, PhD, MSPH This spring, the FDA approved a drug called idecabtagene vicleucel ('ide-cel'), a form of CAR-T cell therapy available to treat some forms of recurrent multiple myeloma (MM). Ide-cel is used to modify a patient’s own T-cells to attack the B-cell maturation antigen (BCMA) present in myeloma.1 Multiple myeloma is a rare chronic cancer of the blood plasma that accounted for only 1.8% (32,000) of all new cancer cases in the United States in 2020, with approximately 12,410 deaths expected in 2021.1,2,3 To give an idea [...]

Searching for Answers to Migraines

Searching for Answers to Migraines By Kathleen Hoffman, PhD, MSPH Migraine headaches can be devastatingly debilitating: When my migraines get so bad, I stare at the wall in complete silence not letting my head touch anything. If my head touches something, it will send more pounding pain throughout my skull. Migraines are a widespread source of disability worldwide, with one systematic review of US government health studies finding 15.3% of Americans reporting a severe headache or migraine in the past three months.1 Three percent of all emergency room visits are for severe headache. Treating them remains difficult, [...]

Genetic and Cellular Studies Carve New Pathways to Treating Epithelial Ovarian Cancer

Genetic and Cellular Studies Carve New Pathways to Treating Ovarian Cancer By Kathleen Hoffman, PhD, MSPH Ovarian, fallopian tube cancer and primary peritoneal cancer are often grouped under the name epithelial ovarian cancer. When classified as subcategories of ovarian cancer, primary peritoneal cancers and fallopian tube cancers are considered rare. The incidence rate of primary peritoneal cancer is estimated to be 6.78 per million.1 Fallopian tube cancers have been thought to be “very rare,” accounting for 1-2% of all gynecologic cancers.2 Because these cancers are usually advanced by the time they are diagnosed, it has been difficult [...]

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021 By Kathleen Hoffman, PhD, MSPH Inspire is presenting the results of two separate surveys during the American Society of Clinical Oncology® (ASCO) virtual conference being held June 4-8. Chosen from the more than 5,400 abstracts submitted for the 2021 ASCO Annual Meeting, the studies focus on COVID-19 vaccine hesitancy and reactions to the vaccine among patients with cancer. Inspire’s cancer community Inspire has almost one million members who are patients with cancer and their caregivers. In the last 15 years, over three million posts (3,555,105) have been [...]