Long-Term Registry for Patients With Chronic Lymphocytic Leukemia and Related Rare Leukemias Including B-PLL, T-PLL, SLL, TNK-LGL, HCL, and Richters Transformation

What this Trial Is About

Researchers are conducting a long-term follow-up registry to collect information on patients with chronic lymphocytic leukemia CLL and related rare lymphoproliferative diseases such as B-prolymphocytic leukemia B-PLL, T-cell prolymphocytic leukemia T-PLL, small lymphocytic lymphoma SLL, T or NK large granular lymphocyte leukemia T or NK-LGL, hairy cell leukemia HCL, and Richters transformation. The study aims to assess overall survival and late effects of therapies, including secondary cancers and infections, beyond what shorter phase III trials have reported. The registry also seeks to better understand disease biology and treatment responses, especially for these rare conditions where data are limited. This is an observational registry study without specific treatments assigned. It includes patients newly diagnosed without immediate treatment needs, those undergoing standard therapies, individuals considered for stem cell transplantation evaluation, and those with relapsed disease. Data are collected over many years to capture the entire disease course, whether patients are treated within or outside clinical trials. The registry enables gathering structured clinical information centrally for these diseases. Participants provide informed consent and are followed over time with regular data collection regarding their health status, treatments received, and outcomes. The primary measure is overall survival from the registry entry date up to 12 years. This extended follow-up helps researchers understand long-term survival and late complications. The registry supports future analyses of biological and clinical data to improve knowledge of these blood cancers. The study started in August 2013 and continues to collect information through December 2026.

Registry of the German CLL Study Group