The Blood Cancer United National Patient Registry presents a unique opportunity for people with a current or past diagnosis of blood cancer to become “citizen scientists.” Together, Blood Cancer United and people with blood cancer provide invaluable insights about the day-to-day impact of blood cancer and treatment on their lives.
The Blood Cancer United National Patient Registry has no active studies currently and is not enrolling new participants.
Special thanks to Bernard and Ethel Garil for their generous support of the National Patient Registry and the Blood Cancer United Community. Their support honors the memory of their son Michael J. Garil, who was diagnosed with acute lymphoblastic leukemia at age 7. Michael dedicated his life to openly sharing his experience in the hopes of helping others.
Largest national patient registry study provided important insights into COVID vaccination
As part of the Blood Cancer United National Patient Registry, we created the largest study in blood cancer patients and was among the first to show how COVID-19 vaccines worked across all major blood cancers and treatment types.
We mobilized the Blood Cancer United National Patient Registry quickly, and within months of COVID vaccine availability began reporting important scientific data.
2020
- December 11: FDA issued emergency use authorization (EUA) for first COVID vaccine, from Pfizer-BioNTech.
- December 18: FDA issued EUA for Moderna COVID vaccine.
- December 22: CDC recommended a phased approach to COVID-19 vaccination. LLS worked to ensure blood cancer patients had early access to vaccines.
2021
- February 17: We launched the first COVID-19 study just weeks after vaccines became available in the U.S. More than 12,000 blood cancer patients eventually joined.
- February 27: FDA issued EUA for Janssen (J&J) COVID vaccine.
- April 23: National Patient Registry reported first data on vaccine safety in blood cancer patients.
- July 15: New Registry study launched to evaluate T-cell immune response to vaccination. It goes on to show that some patients develop this line of defense after vaccination even if they did not develop antibodies.
- July 22: We reported on antibody production following vaccination, alerting patients, physicians, and public health professionals of limitations of their ability to stimulate high antibody levels in blood cancer patients.
- September 8: First of five Registry studies published (in the journal Blood Cancer Discovery).
- September 13: We reported on the effectiveness of an additional vaccine dose in blood cancer patients.
In August 2022, based on the rapid response of patients in the Registry, data showed that a preventive monoclonal antibody therapy had only minimal benefit in blood cancer patients. This data was available well ahead of the FDA removal of the product from the market in January 2023, allowing us to warn patients early to continue taking other precautions to stay safe from COVID.
As a patient-first organization, we made data available to the public in real time, with scientific publications to follow. Our COVID-19 study data was published five times in major scientific blood cancer journals.
Registry data
Helped patients and families make better-informed decisions about how to protect themselves. Armed oncologists with important COVID-19 vaccine safety and effectiveness data that helped them counsel their patients. Gave Blood Cancer United and other advocates important information that helped us lobby for vaccine recommendations tailored to blood cancer patients. Provided scientific evidence for public health officials to use vaccination recommendation specifically for blood cancer patients and others with weakened immune system.
National patient registry studies: Scientific publications
Greenberger LM et al (August 9, 2021). Antibody response to SARS-C0V-2 vaccines in patients with hematologic malignancies. Cancer Cell.
Greenberger LM et al (October 11, 2021). Anti-spike antibody response to SARS-CoV-2 booster vaccination in patients with B cell-derived hematologic malignancies. Cancer Cell.
Greenberger LM at al (November 2, 2022). Anti-spike T cell and antibody responses to SARS-CoV-2 mRNA vaccines in patients with hematologic malignancies. Blood Cancer Discovery.
Greenberger LM and Nichols GL (March 10, 2022). Danger ahead: COVID-19 infections after vaccination. Blood.
Luttwak E et al (June 29, 2023). The efficacy of tixagevimab-cilgavimab prophylaxis against Omicron BA.5 variants in patients with hematological malignancies: Insights from The Leukemia &Lymphoma Society Registry.
Questions? Email [email protected].
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Find free, specialized guidance and information for every type of blood cancer, request financial support, find emotional support, and connect with other members of the blood cancer community.
