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 [...]

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 [...]

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 [...]

Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

Good News about Lung Cancer? Thanks to Bench Science and Pharma

Good News about Lung Cancer? Thanks to Bench Science and Pharma By Kathleen Hoffman, PhD, MSPH Targeted therapies, monoclonal antibodies, and immune checkpoint inhibitors are the good news - making a significant difference in lung cancer mortality, a new study states. Published in The New England Journal of Medicine, the report said, “Mortality from NSCLC decreased even faster than the incidence ...and this decrease was associated with a substantial improvement in survival over time that corresponded to the timing of approval of targeted therapy.” 1Posts and reassurances that people read while visiting the American Lung Association’s Lung [...]

Genetic testing: What patients and caregivers understand and value

Genetic testing: What patients and caregivers understand and value By Richard Tsai There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both online and offline media. Today, direct-to-consumer (DTC) genetic testing companies--which make kits available at between $100 and $200-- have huge databases of genetic information. In fact, even if you have never used a kit, you may be able to be identified through these databases if [...]

Understanding information needs during the patient journey: ovarian cancer

Understanding information needs during the patient journey: ovarian cancer By Kathleen Hoffman, PhD While patients see physicians as the primary and most trusted information resource, research indicates that patients with cancer also seek information elsewhere. Reasons for investigating further include 1) verification or double checking, 2) clarifying what they have learned and even obtaining translations of what they have heard from other patients who have “been there,” 3) being directed by one source to query another source1 and for those who reach out to other patients 4) trust and desire for real world experience in managing expectations. [...]

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]

In new report, Inspire examines clinical trials, genetic testing

In new report, Inspire examines clinical trials, genetic testing Editor’s note: Last week, Inspire released, “Insights from Engaged Patients: An Analysis of the Third Annual Inspire Survey”. Over the past three years, the Inspire Annual Survey has captured insights of over 30,000 respondents, representing more than seven million data points. In the following excerpt from the report executive summary, Dave Taylor, Inspire’s Senior Director of Research, discusses some of the findings from this year’s survey, and its implications for industry. While the proverbial needle has not moved much during this time across many of the attributes we [...]