Grants and Support for Research and Discovery in HCL
We are proud to take a comprehensive approach to research and discovery in hairy cell leukemia. Our grant funding allows investigators to develop and execute exciting research with the potential to change how we understand and treat this rare disease.
In addition to research grant funding, we also support a growing international patient data registry. If you are not already a member of the registry, please take time to read more on our registry page.
Finally, patients with HCL can impact research today and in the future by participating in clinical trials. Your eligibility for a clinical trial depends on a variety of factors such as whether you have HCL or HCL variant, your stage of disease and the type of treatment you’ve already received. We encourage you to review and discuss with your doctor the trials on our clinical trial page.
HCL2025: Expanding Research in Hairy Cell Leukemia
The Hairy Cell Leukemia Foundation (HCLF) and The Leukemia & Lymphoma Society (LLS) have joined forces to invest up to $10,000,000 over 5 years in targeted research to build a more comprehensive foundational understanding of the molecular basis of hairy cell leukemia, develop additional therapies and optimize outcomes for patients with hairy cell leukemia (HCL).
Access the program page to read more about this exciting research initiative.
Other Research Grant Initiatives
Since 2016, the HCLF has partnered with the SASS Foundation for Medical Research to jointly fund up to $2 million in hairy cell leukemia research grants and fellowship awards. Our primary research focus areas include: Basic science research exploring the biology of hairy cell leukemia; Correlative studies for biological and molecular markers associated with existing clinical trials where samples and clinical data are being collected; and Clinical research projects that contribute to studies providing real benefit for patients with hairy cell leukemia, including long-term follow-up studies, detailed quality of life studies, correlative lab studies and studies of new therapy options.
This partnership between the HCLF and SASS Foundation will end in 2023. We will not accept new grant applications through this mechanism.
2021-2022 Grantees
Dr. Clive Zent, University of Rochester Medical Center, Wilmot Cancer Center, USA
Dr. Robert J. Kreitman and Dr. Evgeny Arons, National Cancer Institute, NIH, USA
PAST GRANTEES
2020 Grantees
Dr. Clive Zent, University of Rochester Medical Center, Wilmot Cancer Center, USA
Dr. Versha Banerji, The University of Manitoba, Canada
Dr. Robert J. Kreitman and Dr. Evgeny Arons, National Cancer Institute, NIH, USA
Dr. Chris Oakes, The Ohio State University, USA
2019 Grantees
Dr. Leslie Andritsos, University of New Mexico, Health Sciences Center, USA; and Dr. Claire Dearden, The Royal Marsden, UK
Dr. Ralf Küppers, University of Duisburg-Essen, Germany
Dr. Thorsten Zenz, University Hospital Zürich, Switzerland
2018 Grantees
Dr. James Blachly, The Ohio State University, USA
Dr. Christopher Park, NYU School of Medicine, USA
Dr. Thorsten Zenz, University Hospital Zürich, Switzerland
2017 Grantees
Dr. Leslie Andritsos, The Ohio State University, USA
Dr. Judit Demeter, Semmelweis University, Hungary
Dr. Christopher Oakes, The Ohio State University, USA
Dr. Enrico Tiacci, University of Perugia, Italy
2016 Grantees
Dr. Omar Abdel-Wahab, Memorial Sloan Kettering Cancer Center, USA
Dr. Brunangelo Falini and Dr. Enrico Tiacci, University of Perugia, Italy
Dr. Ralf Küppers, University of Duisburg-Essen, Germany
Dr. Philip Thompson, MD Anderson Cancer Center, USA
Expanding the Scope of our Research
In 2017, we began a partnership with the SASS Foundation for Medical Research and the Leukemia & Lymphoma Society to jointly support $1.2 million in new translational research over a 3-year period. Through this partnership, we jointly funded studies in chemotherapy-free treatment strategies for hairy cell leukemia. This initiative ended in 2020.
Participating Researchers
Dr. Jae Park, Memorial Sloan Kettering Cancer Center, USA
Dr. Enrico Tiacci, Institute of Hematology, University of Perugia, Italy
Fellowship Awards: Supporting Early Career Researchers in Hairy Cell Leukemia
Between 2016 and 2021, the HCLF partnered with the SASS Foundation for Medical Research to jointly fund fellowship awards. In 2017, we launched the first cohort of HCL fellowship awardees with more than $150,000 in early career research support. Fellowship awards were aimed at investigators who wish to pursue a career involving clinical or fundamental research in hairy cell leukemia or related leukemia research fields under an experienced research sponsor's mentorship. We funded fellowship awards up to $75,000 per year. This initiative was completed in 2021.
2019-2021 Fellowship Awardee
Dr. Fabienne Meier-Abt, University Hospital Zürich, Switzerland
2018 Fellowship Awardees
Dr. Sascha Dietrich, University of Heidelberg, Germany
Dr. Wendy Pang, Stanford University School of Medicine, USA
2017 Fellowship Awardees
Dr. Sascha Dietrich, University of Heidelberg, Germany
Dr. Kerry Rogers, The Ohio State University, USA
Dr. Justin Taylor, Memorial Sloan Kettering Cancer Center, USA
Hairy Cell Leukemia Patient Data Registry
Why is a Registry Important for Hairy Cell Leukemia?
Many important questions still remain unanswered in hairy cell leukemia. More research is needed to elucidate outcomes in specific disease subtypes, complications of the diseases and their therapies, and other issues pertinent to patients such as quality of life.
Our Registry is a critically important tool that enables researchers to study hairy cell leukemia in ways not previously possible given the rarity of the disease. Through the Registry, we cooperate and collaborate with patients, doctors, and institutions around the world to collect HCL patient data. The Registry helps researchers identify new trends in patient outcomes, discover previously unknown complications of the disease, and design clinical trials for new therapies until a cure is discovered.
How Can You Get involved?
We encourage your institution to participate in the Hairy Cell Leukemia Patient Data Registry to enrich our collective data and facilitate collaborative research and investigation in HCL. For information on how to involve your institution, please contact Anna Lambertson by email at info@hairycellleukemia.org or by phone at +1 224.355.7201.
2017 HCL Conference: Scientific Sessions held at The Ohio State University, USA
Annual Hairy Cell Leukemia Conference
Since 2013, we have hosted an Annual Conference focused on expanding knowledge of hairy cell leukemia. Our Conference is aimed at researchers and doctors with experience in studying and treating HCL, and whose knowledge would be enriched by information sharing and discussion with other practitioners. This annual meeting helps to create synergy and eliminate silos in knowledge and treatment of the disease among professionals in the field of hairy cell leukemia.
The Conference features presentations and panel discussions tailored for researchers and healthcare professionals, often in conjunction with a free Seminar for patients and family members. Leading HCL experts participate as speakers during the Patient Seminar.
2019 HAIRY CELL LEUKEMIA FOUNDATION CONFERENCE coverage
Each year, our annual scientific conference brings together leading hairy cell leukemia researchers and experts. Over two days, conference attendees present research and difficult cases, and discuss strategies for collaborative study and consensus building in approaches to treatment. More than 50 doctors from 10 countries representing HCL Centers of Excellence were invited to attend our conference on October 24-25, 2019 in Rome. Many of these doctors are past or current recipients of research grants funded by the Hairy Cell Leukemia Foundation in partnership with other foundations. During the conference, these investigators shared exciting updates on their research and clinical trials. The conference featured high-caliber scientific presentations and discussion about optimal therapies for patients, as well as thoughtful conversations about opportunities for future research to further improve patient outcomes.
OncologyLive interviewed several attendees during our conference and published excerpts of these interviews after the meeting.
Minimal Residual Disease (MRD) In Management of Hairy Cell Leukemia
Both Dr. Robert Kreitman and Dr. Farhad Ravandi sat down with OncLive to discuss the role of minimal residual disease (MRD) in HCL management.
Dr. Robert Kreitman, National Cancer Institute, NIH
In his comments, Dr. Kreitman said that MRD appears to cause relapse in some patients and affects the length of a patient’s remission. “If you can get rid of MRD, you can have a longer complete remission duration,” he said. Dr. Kreitman also discussed the effectiveness of moxetumomab pasudotox during the phase I and phase II trials “in not only achieving [complete remission], but eliminating MRD.” He said, “We have patients who still have MRD-negative disease more than 8.5 years after moxetumomab pasudotox. It is tempting to say that those patients have permanent elimination of MRD, but it is still too early to say.”
Read Dr. Kreitman’s interview with OncLive. >>
Dr. Farhad Ravandi, The University of Texas – MD Anderson Cancer Center
Dr. Ravandi also discussed MRD in hairy cell leukemia:
“In more indolent leukemias, such as hairy cell leukemia, the value of MRD assessment is somewhat controversial. However, there have been studies that have shown that if you have persistent disease at a time of remission, you are probably more likely to relapse. The original study used immunohistochemistry showing that patients who are in remission and still had evidence of disease in their bone marrows, they are more likely to relapse.“ He added, “but there are also some publications that have shown that in indolent diseases such as hairy cell leukemia, you can have a few hairy cells in your bone marrow 10, 15, or 17 years after achieving remission and still not have a full-blown relapse.”
Read Dr. Ravandi’s interview. >>
Examining Non-Chemotherapy Options For Patients With Hairy Cell Leukemia
During our conference, Dr. Justin Taylor from Memorial Sloan Kettering Cancer presented updates on his institution’s phase II clinical trial in combining vemurafenib plus obinutuzumab for previously untreated patients. He said, “This is the first trial in hairy cell leukemia looking at targeted agents as a frontline treatment. The rationale is to see if treating the patients upfront before they relapse might have better outcomes.”
Dr. Taylor says that early results from the trial are encouraging. This research is being supported by a jointly funded grant from the Hairy Cell Leukemia Foundation, Leukemia & Lymphoma Society and SASS Foundation for Medical Research.
Read Dr. Taylor’s interview. >>
Cell Free DNA As A Biomarker For Hairy Cell Leukemia
Dr. James Blachly from The Ohio State University Comprehensive Cancer-The James is a 2017/2018 Research Grantee of the Hairy Cell Leukemia Foundation and SASS Foundation for Medical Research. During our conference, he presented an update on his work assessing cell free DNA (cfDNA/ctDNA) in patients with HCL, which could improve the way that HCL patients are monitored and evaluated for residual and relapsed disease.
View a video excerpt of Dr. Blachly’s interview with OncLive. >>
Ibrutinib In HCL Treatment
Dr. Kerry Rogers from The Ohio State University Comprehensive Cancer Center-The James discussed data from an ongoing trial using ibrutinib to treat patients with both classic and variant forms of hairy cell leukemia. BTK inhibitors such as ibrutinib have been approved by the FDA to treat other B-cell malignancies. “Since ibrutinib is available and potentially effective (especially for patients who might not benefit from chemotherapy), we decided to evaluate it in hairy cell leukemia,” said Dr. Rogers. Regarding results from the study, Dr. Rogers said, “It is showing that patients who weren’t benefiting from standard therapies like pentostatin or cladribine are able to benefit from ibrutinib in terms of stable disease control for a good duration.”
Dr. Rogers was a member of our inaugural cohort of fellowship awardees in 2017, supporting her research in ibrutinib to treat HCL. The fellowship award program is jointly funded by the Hairy Cell Leukemia Foundation and SASS Foundation for Medical Research.
Read Dr. Rogers’ interview. >>
MOXETUMOMAB PASUDOTOX IN HCL TREATMENT
Dr. Agnieszka Janus from Copernicus Memorial Hospital in Poland discussed her experience in treating patients with moxetumomab pasudotox, which was approved by the FDA in 2018 for relapsed or refractory patients. She said, “The efficacy is great because it works even if the patient is heavily treated. We are very happy to have early access to this drug" for our patients.
During our conference, Dr. Janus shared case studies where patients who didn’t respond to moxetumomab pasudotox were treated with vemurafenib.
STANDARD OF CARE FOR HCL
Dr. Enrico Tiacci of the University of Perugia, Italy discussed the effectiveness of pentostatin and cladribine in HCL treatment, noting the strong responses among 80 to 90% of patients treated with these purine analogs.