The Leukemia & Lymphoma Society Launches National Patient Registry to Answer Crucial COVID-19 Questions for Blood Cancer Patients
Collaboration with Ciitizen to Collect Data from Blood Cancer Patients Who Are More Vulnerable to Severe Illness and May Not Get Full Protection from COVID Vaccines
RYE BROOK, N.Y., Feb. 17, 2021 – The Leukemia & Lymphoma Society (LLS) announced today a collaboration with Ciitizen, a digital health technology startup, to collect data on the impact of COVID-19 and vaccination from people with a current or past diagnosis of blood cancer as part of a broader strategic partnership. The LLS National Patient Registry opened today to enroll all blood cancer patients, including those who have been vaccinated against COVID-19 or may have plans to be, as well as blood cancer patients who have tested positive for the virus.
“Overall, patients with blood cancer are at risk of more severe outcomes from COVID, but the risk is not the same across all types of blood cancer,” said Gwen Nichols, M.D., LLS Chief Medical Officer. “We are calling on blood cancer patients to become citizen scientists by joining our Registry to help us learn all we can to improve care for blood cancer patients during this pandemic.”
The LLS National Patient Registry will also focus on learning how individual blood cancer patients respond to COVID vaccination. Blood cancer patients may not mount an adequate response to vaccination depending on the type of cancer they have and where they are in their treatment.
“Because vaccine clinical trials included very few blood cancer patients, we’re missing this key data,” says Dr. Nichols. “We need to understand how different types of people with blood cancer respond to the vaccines so we can develop the best vaccination and public health strategies to maximize their protection against SARS-CoV-2, the virus that causes COVID. 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.”
“Ciitizen is thrilled to be partnering with LLS and this remarkable patient community to answer some of our time’s most pressing research questions and support the blood cancer community,” said Ciitizen Founder and CEO Anil Sethi.
Since its founding in 1949, LLS has invested more than $1.3 billion in cutting edge blood cancer research worldwide, and its support has been instrumental in the development of nearly every breakthrough in blood cancer treatment. To address the unique concerns of blood cancer patients throughout the COVID-19 pandemic, LLS has amplified its longstanding efforts to provide free information and support to blood cancer patients and their families, while also advocating for policies that will protect patients.
All blood cancer patients who join the LLS National Patient Research Registry will receive full access to all records that have been requested by the patient including, imaging, genetic information and a synthesized timeline of their care to create a robust “mobile health record” at their fingertips. To join the Registry, all patients will sign the patient-friendly IRB approved Consent that transparently lays out the terms of their participation in this research. “Ciitizen believes patients are the rightful owners of the health data in their Ciitizen profiles, and they should decide who gets access,” says Ciitizen Chief Regulatory Officer and Co-Founder Deven McGraw.
The LLS National Patient Registry was created to honor the memory of Michael Garil, who was diagnosed with acute lymphoblastic leukemia in 1974 at the age of seven. His parents, Ethel and Bernard Garil, have generously supported the creation of The LLS National Patient Registry to gather vital information from a large pool of people affected by blood cancers.
Joining The LLS National Patient Registry today is safe and easy. Participation will have a far-reaching impact on improving care for everyone with blood cancer. Visit LLS.org/registry to learn more about the Registry including where to sign up.
For more information, check out our COVID-19 Resource Page
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society® (LLS) is a global leader in the fight against cancer. The LLS mission: cure leukemia, lymphoma, multiple myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
Founded in 1949 and headquartered in Rye Brook, NY, LLS has regional offices throughout the United States and Canada. To learn more, visit www.LLS.org. Patients should contact the LLS Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m., ET.
For additional information visit lls.org/lls-newsnetwork. Follow us on Facebook, Twitter, and Instagram.
Ciitizen is a novel, patient-mediated online platform which allows patients to collect and store their medical records. Ciitizen turns these medical records into structured, longitudinal data that can be shared by patients with whomever they want - including for their own clinical treatment or for observational research and clinical trials. Through access and control over full, longitudinal medical records patients have a powerful tool both in their own care and to contribute to research. To learn more, visit www.ciitizen.com/LLS.
Senior Manager, Mission Communications
The Leukemia & Lymphoma Society
Director of Partnerships