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Frequently Asked Questions

Q: What is the objective of the Consortium?

A: To enhance the understanding of, and to identify more effective methods of predicting and, eventually a method to prevent, progressive multifocal leukoencephalopathy (PML) through a collaborative multi-institution effort.

 

Q: How might patients benefit from the Consortium’s efforts?

A: By pooling resources and sharing data, we hope to make significant progress in understanding how to better minimize the risk of PML in patients. Ultimately, the objective is to gather sufficient information to help reduce risk and to conduct research that is essential for achieving patients’ best care and protection in collaboration with academia, health authorities and other stakeholders.

 

Q: Can you tell me more about the connection between PML and the drugs with which it has been associated?

A: PML is caused by an interplay between multiple factors, including a compromised immune system and the presence of the JC virus. PML is also associated with certain immunomodulatory and immunosuppressive therapeutic treatments.1 The purpose of the Consortium is to look at PML, rather than any individual therapeutic agent. Individuals who would like to find out information about an individual therapy should contact the medical information group from the manufacturer of that therapy.

 

Q: Isn’t the best way to prevent PML to remove the drugs that cause it in the first place?

A: It is important for physicians and patients to evaluate the benefits and risks of any therapy prior to making treatment decisions.

 

Q: How soon do you think you may see results? When do you expect to learn enough about PML to make a difference for patients?

A: The pace of scientific discoveries is highly unpredictable. As we accrue data that expands our knowledge of PML, those findings will be shared with the medical and scientific community, as appropriate.

 

Q: What will the output of the Consortium look like? Will you present your findings at medical meetings?

A: The Consortium intends to develop shared resources such as databases and specimen collections to gain insights into PML that might be difficult to accomplish for each individual partner separately. These resources will be available to all members, and the Consortium is developing plans for making certain resources accessible for third-party scientific exploration. Furthermore, the Consortium is developing a research agenda geared to facilitate prevention, and investigate potential treatment of PML, and the Consortium is committed to publishing results through publications and presentations in a timely manner, as appropriate.

 

Q: Do you have relationships with any other groups at this time?

A: The Consortium has established connections with academic researchers, regulatory authorities and patient communities through its Scientific Advisory Board, patient advisors and ongoing interactions with regulatory agencies. It is open to engaging other groups, including other pharmaceutical companies, non-profit organizations and academic institutions.

 

Q: Will you communicate regularly with patients? With physicians? With the media?

A: The objectives of the Consortium are focused on furthering our understanding of PML and translating this knowledge into strategies for prevention, and we hope treatment, of the disease. The result of the work sponsored by the Consortium will be shared with all interested parties through traditional venues for publishing scientific findings, as appropriate.

 

Q: What role, if any, will government agencies play?

A: The Consortium seeks to engage in a dialog with government agencies. We are committed to sharing important insights with all relevant agencies and other stakeholders.

 

Q: Which company is taking the lead?

A: The PML Consortium is a joint effort with a collective approach to establishing a knowledge base with sufficient number of patients to identify risk factors, improve the management of PML and conduct research into the biology of PML.