As we approach the one-year anniversary of the LLS National Patient Registry COVID-19 study, we are humbled by the commitment of the more than 11,000 blood cancer patients and survivors like you who joined our Registry as citizen scientists.
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With your participation, LLS has collected and shared the largest pool of data about how blood cancer patients and survivors respond to COVID-19 vaccines. Our data has not only helped individuals make more informed choices, but it helped inform CDC guidance to offer four doses of the Pfizer or Moderna vaccines to immunocompromised individuals, including blood cancer patients.
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Throughout the pandemic, LLS has forcefully advocated for the safety of blood cancer patients, including advocating for policies that ensure access to care and treatments like vaccines and antibody cocktails. The data from our Registry has helped illustrate which patients are less likely to get optimal protection from vaccines because of their type of blood cancer or because they are on a treatment that suppresses their immune system.
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Our studies have evolved to meet the changing COVID-19 landscape.
Our first study—assessing response to two doses of either Pfizer or Moderna vaccines—was designed, reviewed and approved by an independent Institutional Review Board (IRB) and launched on February 17, 2021, just six weeks after vaccines began to become widely available.
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Our study team revised and expanded our study protocols several times over the year to reflect changes in vaccine recommendations and introduction of new treatments. Protocols lay out exactly how studies are done and must be followed strictly to ensure the data collected is accurate and credible. CDC, FDA and other policy-making groups look to LLS data because our research—the research we are doing together—is scientifically rigorous.
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Some protocols expand the study. For example, we are now measuring antibody response to four vaccine doses instead of two. Others results in fewer blood tests because new COVID treatments impact test validity. For example, COVID-19 antibody treatments, which provide an immediate infusion of antibodies, confuse blood tests that measure vaccine response and do not allow us to compare all tests equally. Blood tests cannot tell the difference between antibodies from an infusion or a vaccine, and therefore their results cannot be included in the study.
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Antibody treatments can be vitally important for Registry participants who are not responding well to vaccines. So, while this treatment prevents us from including certain patient blood tests in our study, LLS encourages Registry participants to get antibody treatments if their healthcare team recommends them and if they can access the currently limited supply. Your safety is our first priority.
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Get all vaccine doses as recommended and do not delay seeking care if exposed to COVID-19
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The most important thing you can do—and that you can ask those around you to do—is to get vaccinated. In people with normal immune systems, the booster dose (their third dose) is 90% effective against hospitalization, even against the Omicron variant. People with compromised immune systems should receive an extra (third) dose before their booster dose, which is their fourth dose. This LLS COVID-19 vaccination schedule will help you to understand what doses you need and when.
LLS Registry research shows that the third dose benefits most blood cancer patients, and we believe the booster dose will offer additional benefits. However, because some blood cancer will still not have optimal protection, even with the additional vaccine doses, we urge everyone to continue other preventive efforts. Avoid large crowds, mask up and maintain social distancing. Frequent hand washing is always a good idea.
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Regardless of individual antibody results, LLS encourages patients to get all doses as recommended by CDC. A high antibody levels, while a positive sign that your immune system has responded to vaccines, is not the only indication of protection. Vaccines affect other, not as easily measured immune responses, including T-cells.
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Data also shows that the antibodies become more “focused” with additional vaccines, making them more protective against the Omicron variant.
Blood cancer patients and survivors are at higher risk of severe COVID-19 outcomes, including hospitalization and death. Do not delay getting care if you test positive for COVID-19, whether or not you have symptoms, or if you come in close contact with someone who is infected. Monoclonal antibodies, including one that can prevent COVID-19 before you are even exposed to it, and antiviral treatments can offer additional layers of protection.
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What’s next for the Registry?
To help us with our next planning stage and to ensure we have up-to-date information about every participant, we ask that you complete this short survey
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In the meantime, the LLS Registry COVID-19 booster dose study is already underway. This study is assessing antibody response to the booster, or fourth vaccine dose, among blood cancer patients and survivors. We expect to report data in the coming months as participants reach the recently updated five-month timeframe to receive their booster vaccine dose.
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The LLS Registry T-cell immune response study is also ongoing. This study will provide important information about vaccines effect on T-cells’ ability to create “killer cells,” the first line of defense against infections like COVID-19. This study is looking at a carefully selected cross section of 500 participants that will help us provide information that will be relevant to the widest range of blood cancer patients and survivors.
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Our registry is still accepting new blood cancer participants.
Click here to join: ciitizen.com/lls
We encourage you to share this within your network of friends and family. We are also thinking beyond COVID. We look forward to sharing new Registry studies and research opportunities with you in the future.
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Fulfilling the LLS Mission
The Leukemia & Lymphoma Society is at the forefront of the fight to cure cancer and to improve the quality of life of patients and their families.
When COVID-19 struck and was hitting the blood cancer community especially hard, LLS stepped in with an unprecedented effort. We created our own unique research study, engaged the community and provided information, in as close to real-time as possible.
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We cannot thank each of you enough for stepping up with us. Together, we have already made—and continue to make—a real difference in the lives of people touched by blood cancer.
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Sincerely,
Larry Saltzman, MD
Executive Research Director, LLS National Patient Registry
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Gwen Nichols, MD
LLS Chief Medical Officer
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Lee Greenberger, PhD
LLS Chief Scientific Officer
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