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Opinion: Science and society must collaborate in setting research agenda









































A long-awaited trial of Dr. Paolo Zamboni's controversial treatment for multiple sclerosis known as "liberation therapy" has concluded the procedure is ineffective and should be avoided. NATHAN DENETTE / THE CANADIAN PRESS

Much anticipated initial results of the Canadian chronic cerebrospinal venous insufficiency (CCSVI) clinical trial for multiple sclerosis (MS) were announced on March 8. The results demonstrated that the CCSVI procedure is ineffective compared to a neutral procedure in a group of 104 MS patients after 48 weeks. The outcome of the study at this time point serves as an important opportunity to reflect on the critical importance of the partnership between the public, scientists, and policymakers in setting research and funding agendas.

As many as 100,000 Canadians are affected by the debilitating symptoms of MS that often rob them of their mobility and cognitive functions. The prevalence of this degenerative brain disease is so high in Canada compared to the rest of the world, that it has been termed Canada’s disease. In 2009, an Italian physician proposed the CCSVI procedure, sometimes called the Liberation Therapy, as a potential treatment for MS. He believed that narrowed veins are the root cause of MS, and suggested that this narrowing causes inefficient removal of blood from the brain and build up of iron deposits. The consequent inflammation in the brain and spinal cord attacks the protective coating of nerve cells, and leads to the onset of devastating MS symptoms. The CCSVI procedure that widens the veins of MS patients, he suggested, would cure the disease.

The public eagerly anticipated CCSVI interventions, but the scientific community was more sceptical. Indeed, studies demonstrated that MS patients do not have narrowed veins more frequently than the general population, and called Paolo Zamboni’s theory into question. Still, in response to public demand for CCSVI research, $5.4 million was invested in a multi-site clinical trial across Canada to test the CCSVI procedure.

While results of the CCSVI trial may not have lived up to initial hopes, was the CCSVI trial a failure? We do not think so. Clinical research is done to gain scientific knowledge about the safety and effectiveness of experimental medical interventions. Sometimes clinical research leads to meaningful therapies; sometimes it leads to only to incremental advances. Negative results that demonstrate ineffectiveness of new approaches, such as those demonstrated in the CCSVI trial, are also important in the scientific process as they signal to scientists and regulators when to redirect research and funding resources toward different avenues. Indeed, in the face of negative results in the CCSVI trial, MS remains the focus of many other promising research efforts, including ongoing investigations using stem cells.

The CCSVI story serves as an opportunity to reflect on the partnership between the public, scientists, and policymakers in priority setting. Many criticized the CCSVI trajectory as being more motivated by political, social and media pressure than by science. The story highlights an opportunity for better engagement and communication between all the relevant stakeholders in order to build bridges of trust and productive collaboration.

More conversations are needed about balancing the urgency of affected individuals to access potential new therapies, and the duty of scientists and regulators to protect research participants from potential harms of unfounded trials and to allocate scarce research resources in a just manner. A dedicated effort on behalf of the scientific community to understand the lived experience and honour the experiential expertise of patient communities will promote better responsiveness to the public. Scientists also need to be both protected and incentivised to communicate about their research on accessible platforms, including social media, to keep the public abreast of both exciting advances as well as caveats and set-backs in publicly funded research endeavours.

Encouraging better civic engagement in science and science policy is both a logical priority and ethical imperative given the investment of collective resources in clinical trials. The CCSVI experience demonstrates a need for proactive public deliberations and ever clearer, mutually respectful benchmarks for the level of evidence that should be required when setting research agendas for Canada’s health care future.

Story Source: The above story is based on materials provided by VANCOUVERSUN
Note: Materials may be edited for content and length


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