Preliminary Data Requests Approved for the HCL Patient Data Registry
The HCL patient data registry is the only one of its kind dedicated solely to hairy cell leukemia. The rarity of HCL creates challenges for investigators who want to better understand and develop new therapies for patients. Investigators may only have access to patient data from their own institution and that data may be insufficient in quantity to conduct a meaningful study. Our registry combines data from around the US and will include data from other countries. Investigators can request from the registry larger batches of data than they could access at their institution alone, increasing their capacity to develop more significant research.
A scientific review committee composed of experts from HCL Centers of Excellence receives and reviews quarterly requests for patient data queries. In 2020, the committee approved multiple requests. These investigators now have preliminary approval to receive data from the HCL patient data registry. They will need to submit a formal research protocol before accessing data.
The proposed protocols tentatively approved for patient data are:
Evaluating the Role of PET-CT/CT in Hairy Cell Leukemia
Dr. Tamar Tadmor, Bnai-Zion Medical Center
Aim of the study: To study the role of PET CT in HCL patients
Classic Hairy Cell Leukemia with Focal Bone Lesions (FBL)
Dr. Matthew Cross, Royal Marsden Hospital
Aim of the study: FBL is a rare complication for patients with classic HCL. There is currently limited literature to help clinicians and patients evaluate key factors such as prognostic significance or response to therapy. This study will attempt to provide data on these factors and facilitate further research.
Monocyte Count and Incidence of Thrombosis in HCL Patients
Dr. Eric Kraut, The Ohio State University
Aim of the study: A retrospective study to investigate the risk of thrombosis in patients with HCL
The study will evaluate location and type of thrombosis. It will also evaluate potential provoking factors such as hospitalizations, smoking, elevated BMI, central line, hormone use and chemotherapy, and prior history of thrombosis. The relative risk of thrombosis in HCL will be compared to other malignancies.
Updated Risk Stratification Profiling in HCL
Dr. Michael R. Grever, Dr. Mirela Anghelina and Dr. Christopher Oakes from The Ohio State University; and Dr. Leslie A. Andritsos from The University of New Mexico
Aim of the study: Develop an updated system based on contemporary clinical, demographic, pathological and molecular data and documented responses to modern therapies.
This study is identifying the clinical, pathological and genetic variables that influence: time to first treatment, response to treatment and progression-free survival