Published on March 18, 2021
Leukemia & Lymphoma Society Studies COVID Vaccine Response in Patients
The Leukemia & Lymphoma Society has partnered with a digital health technology company, Ciitizen, to collect data about the effects of COVID-19 vaccinations on people with blood cancers. The data collection will also include people who had previously been infected with the novel coronavirus to see how they fared after the infection cleared their system.
The LLS National Patient Registry is currently accepting volunteers to participate.
“Anyone who has been diagnosed with a blood cancer or is currently being treated is welcome to participate,” said Dr. Larry Saltzman, Patient Advocate and LLS Executive Research Director.
Dr. Saltzman knows first-hand how important this registry is as a physician and also as a patient. He was first diagnosed in 2010 with both chronic lymphocytic leukemia (CLL) and small cell lymphocytic lymphoma (SLL). However, these diseases haven’t stopped him from working as a patient advocate or keeping up with his strenuous running routine. He continues to stay fit and inspire many by running marathons, including three in Boston, and raising over $200,000 for LLS while doing so.
How Do I Participate in the Leukemia & Lymphoma Society COVID Vaccine Study?
People who are interested in joining the registry can visit the LLS website to sign up. There are no fees to participate and LLS is waiving the fee for having blood drawn at your local LabCorp.
Depending on where a person is in their vaccine journey, blood may be drawn before a person is vaccinated and followed by two additional blood draws after being fully vaccinated. This will help inform the researchers about how patients are doing throughout the process. People with blood cancers may not have the same response to the COVID-19 vaccine, depending on what type of cancer they have and where they are in their treatment journey. This is why it is important to look at the efficacy of the vaccine at different intervals.
Access to Leukemia & Lymphoma Society Data
Patients will have access to their data online through a web-based system, where they can provide consent along the way and see their information shortly after it is uploaded. An email message will alert them that the data has been received. They can then log into the system and review their data. Data is only shared with research scientists after patient-identifiers have been removed and encrypted.
“We’re not sharing anything without patient consent,” Dr. Saltzman emphasized.
The records that patients can log in and view include images, genetic information and a timeline of their care to create a mobile health record.
“Ciitizen believes patients are the rightful owners of their health data in their profiles, and they should decide who gets access,” said Ciitizen Chief Regulatory Officer and Co-Founder Deven McGraw.
Future Leukemia & Lymphoma Society Studies
The collective and cancer-specific data may be helpful down the road to researchers globally.
“Study leads of specific blood cancers may be interested, and we would ask the patient to consent to share their de-identified data for that particular study,” said Dr. Saltzman.
It will be interesting to see the differences in people who, for example, have been in active treatment for the last two years, compared with people who have been in remission for 10 years.
“As a patient who has had the vaccine, I’m curious to know if I have developed antibodies,” Dr. Saltzman said.
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