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If you have recently been diagnosed with CLL, you probably have a lot of questions. 


Information about CLL


What we are doing to defeat CLL



Dr. Stephan Stilgenbauer (University of Ulm, Germany) discusses the rapidly evolving field of CLL genetics.




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Some of the projects CLL Global funds from the laboratory to clinical trials:

Dr. Klein 

Herbert Irving Comprehensive Cancer Center, Columbia University 

UT MD Anderson Cancer Center 

Dr. Gibson 


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April 2012 



Here we are again, keeping you up-to-date on CLL research and the community involved in accelerating progress. A new partner perspective and project update are featured below. Also, starting this month Tidbits will feature a series on clinical trials and the process required for new treatments to receive FDA approval. 



Skating for a Cure


A group of girls from the Panthers Figure Skating Club in Coral Springs, Florida are using their athletic talent to raise CLL awareness and funds for CLL research by hosting Skate for a Cure events. One of the girls, Deanna Velez, is the daughter of a CLL patient. All of the girls and their coach, Martine de la Torre, are committed to utilizing their talents to benefit the quest of CLL Global to find a cure.  


The Skate for a Cure events are held at the Saveology Iceplex in Coral Springs. Half of the admission fees from each event are designated for CLL Global. The first event was held on November 12, 2011 and had a successful turnout. The goal is to hold three events per year. The skaters organized the 

Panthers skaters at disney world
L to R: Michelle Finn, Martine de la Torre (coach), Ariyana Kaya and Deanna Velez are some of the members of the Panthers Figure Skating Club helping CLL Global.

initial event, inviting all of their friends and handing out fliers.


Members of the Panthers Figure Skating Club are extremely driven. They skate every day after school, and some of the members recently participated in a half marathon at Disney World. In addition to their regular training, Coach Martine set up a conditioning program to ensure everyone would be physically ready to complete the 13.1 mile run with ease. Even with a sprained ankle, Deanna made it across the finish line! The tenacity of the Panthers girls has already benefited CLL Global, and their ongoing support will continue to help accelerate CLL research.      



Project Update:  

ROR1 - A Potential Target for Therapy of CLL  


Some years ago ROR1, a receptor protein, was found to be present on CLL cells but not on other cells in the body. This opened the possibility of having targeted treatment for CLL, and researchers have since been pursuing various means of targeting ROR1. (Click here to learn more.) 

Dr. Hakan Mellstedt
Dr. Håkan Mellstedt

Unlike chemotherapy, which wipes out both healthy and cancerous cells, targeted treatments only kill specific cells. This greatly reduces toxicity and related side effects. For his CLL Global Alliance project, Dr. Håkan Mellstedt (Karolinska Institute, Sweden) and colleagues have produced and tested several monoclonal antibodies and tyrosine kinase inhibitors targeting ROR1.


Dr. Mellstedt and his team have produced both mouse and humanized monoclonal antibodies specific to ROR1 which are currently being tested in CLL mouse models as part of the necessary pre-clinical work. In mouse model experiments, these antibodies are at least as effective as rituximab in killing CLL cells. (Rituximab is a monoclonal antibody currently used as part of standard treatment in CLL.) Further studies are currently being conducted to establish the best ROR1 specific monoclonal antibody to test in clinical trials.


Tyrosine kinase inhibitors are small molecules engineered to block certain pathways, proteins or other molecules on cells thought to be important in a disease. Several tyrosine kinase inhibitors are being studied in clinical trials. For example Ibrutinib (formerly known as PCI-32765) which inhibits Bruton's tyrosine kinase is currently being tested in CLL patients. Dr. Mellstedt and colleagues have produced variations of ROR1-specific tyrosine kinase inhibitors. Results from in vitro experiments, or laboratory studies conducted in test tubes, demonstrated that ROR1 kinase inhibitors are very effective in eliminating CLL cells and are capable of killing fludarabine-resistant CLL cells. This could prove extremely beneficial for chemotherapy-resistant patients if these findings can be replicated in the clinic. For now, the next step is to test the kinase inhibitors in mouse models.


Over the last couple of years, Dr. Mellstedt and his colleagues

produced the first human ROR1 monoclonal antibodies and the

ROR1 antibody
ROR1 specific antibodies are tagged with florescent markers in green. They attach to cells expressing ROR1. www.lsbio.com

first ROR1-specific tyrosine kinase inhibitors for clinical testing. During the course of their project it has come to light that ROR1 is expressed in other hematological malignancies and also in some solid tumors. This means that targeting ROR1 might have a much larger indication than just CLL. In addition, the novel data produced from this project has allowed Dr. Mellstedt to leverage his CLL Global funding into an additional $2 million dollars (U.S.) in other ROR1-related research funding.  

Click here to learn more about Dr. Mellstedt's CLL Global Alliance project. 



Phase I Clinical Trials


Clinical trials facilitate the advancement of better therapies for disease by testing new drugs not approved by the U.S. Food and Drug Administration (FDA) or by testing FDA-approved treatments for new indications, doses or in combination with other drugs. The process for a potential new treatment to move from experimental to standard of care often takes many years. Before a drug can be tested in a clinical trial, it is thoroughly analyzed in the laboratory setting. A protocol has to be written detailing precisely how the study will be conducted. The protocol and lab results are then scrutinized by institutional review boards and often the FDA to determine approval to conduct a particular study. 


A new compound goes through several phases of development. Each phase has a different purpose. Phase I trials represent the first time a drug is tested in humans. In order to participate in a clinical trial, a patient must meet certain criteria which varies by study and must be consented by an authorized employee who lays out the specific treatment plan, the required medical tests and safety information. The overall purpose of a phase I trial is to ensure the drug is safe for humans. The key points are to determine:


1) The safety and tolerability of the drug

2) The best way to administer the treatment (IV or oral)

3) If the new treatment is effective against the disease    


Phase I trials verify if the

human testing tshirt

benefits and side effects of the drug coincide with laboratory results. Phase I trials are usually separated into cohorts where the dose of the drug is increased by cohort to establish the best dose for future testing. These trials are generally conducted at a single or a few institutions and require a limited number of participants.


Some patients may be reluctant to go on a phase I trial, as they are truly experimental. Participating in any clinical trial is strictly voluntary. It is important for patients to fully understand the risks and benefits of a clinical trial before enrolling. Doctors will always provide a standard of care option if a patient is not comfortable participating on a clinical trial. It is worth noting that clinical trials provide patients with access to the most cutting edge thinking and allow for patients to be proactive in curing their disease.


Next month we will discuss the process involved in moving a compound from a phase I study to a phase II trial. Until then, be happy and well.  



CLL Global Research Foundation