Registry aims to improve understanding of how COVID-19 affects patients with blood cancer
Click Here to Manage Email Alerts
The Leukemia & Lymphoma Society launched a national patient registry designed to improve understanding of how the novel coronavirus and COVID-19 vaccination affect people with blood cancer.
Prior studies showed patients with hematologic malignancies are at greater risk for severe COVID-19 outcomes; however, that risk varies by disease type.
Because individuals with cancer often were left out of COVID-19 vaccine trials, there is a lack of data about how these patients respond to the virus and vaccines.
Leukemia & Lymphoma Society (LLS) representatives are asking patients to share their data with the LLS National Patient Registry to help inform public health strategies that maximize protection against the coronavirus and provide insights to counsel people with blood cancer about COVID-19 vaccinations.
LLS — which has relationships with health care providers in academic settings and community practices — will alert oncologists and other members of the cancer care team to this effort in hopes of increasing participation, according to Larry Saltzman, MD, the society’s executive research director.
“LLS maintains contact with thousands of providers who receive an overview of upcoming projects, including the LLS National Patient Registry, with a call to action to encourage their patients to join the registry,” Saltzman told Healio. “LLS will also equip providers with a one-pager that can be handed out to patients, emailed or shared digitally, and posted in common areas with detailed instructions on how to join the registry.”
The society launched the registry in partnership with Ciitizen, a digital health technology startup that offers an online platform that allows patients to collect and store their medical records securely.
“We were selective in finding the right partner that can help us generate research-grade data for this initiative while still keeping the patient squarely at the center. We’re excited to have found that in Ciitizen,” Gwen Nichols, MD, the society’s chief medical officer, said in a press release.
Registry data will increase knowledge about how different individuals — based on factors such as the type of blood cancer they have and where they are in their treatment journey — respond to COVID-19 vaccines, Nichols said. This will help ensure development of optimal vaccination and public health strategies to maximize protection against the virus, she added.
All patients with blood cancer — including those who tested positive for the coronavirus and those who either have been or intend to be vaccinated — are eligible.
Nichols urged patients to “become citizen scientists” by joining the registry. However, health care providers can play a key role.
“Physicians can discuss the benefits of the LLS National Patient Registry with their patients, share informational materials and post a call to action for patients to join on their website,” Saltzman told Healio. “Patients should be pointed to the following URL: www.lls.org/registry.”
Collapse
Click Here to Manage Email Alerts