The survey, announced on April 16, aims to provide patients and physicians with information that will help guide future healthcare decisions. It assesses myeloma patient vulnerability, and the effect of the ongoing pandemic on treatment and disease outcomes.
Initial findings are expected to be released this month, with more extensive results published by December, HealthTree, a myeloma community online division of the nonprofit CrowdCare Foundation, stated in a press release.
“The patients who have decided to participate in this study are helping to accelerate research on COVID-19 and its impact on myeloma treatment and patient outcomes,” Jenny Ahlstrom, HealthTree founder, said in the release.
“HealthTree was designed to empower patients to make the most educated decision at every stage of their disease journey, all while moving the research community closer to a cure,” Ahlstrom added. “The COVID-19 pandemic has created enormous challenges to the cancer community, forcing doctors and patients to delay or make changes to treatment.
“With this study we will capture those challenges and outcomes.”
People taking part answered survey questions related to their health and care during the pandemic. Information gathered in questions was de-identified to protect privacy, and participants also completed a HealthTree profile.
Scientists working in myeloma will analyze the aggregated and anonymous answers to identify recommendations for patient care during the global viral outbreak, which has restricted access to health centers for extended periods of time. The American Cancer Society expects 32,270 new cases of myeloma will be diagnosed this year.
This survey is the first of a planned series of studies measuring how the pandemic is affecting people with myeloma, and cancer patients more broadly. Because this coronavirus is relatively new, little information is available on the risks for this patient group. However, cancer patients in general are considered among those thought at high risk of complications.
With a reported user base of more than 5,200 patients, HealthTree is an online community portal that helps people with multiple myeloma explore treatment options, find appropriate clinical trials, and contribute their de-identified data to aid work toward a cure. The CrowdCare Foundation provides patient education, advocacy, and research funding for myeloma and amyotrophic lateral sclerosis (ALS).
In related news, a case report suggests that Actemra (tocilizumab), an approved treatment for different types of arthritis, may help treat severe COVID-19 infections in people with multiple myeloma or other blood disorders.
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