The Genetics of Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL) in African Americans and Other Minorities
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The question is asked repeatedly: How many times did Edison fail before he successfully invented the light bulb? The actual number is irrelevant but the key takeaway was one of persistence and tenacity. When queried about repeated failed attempts, quoted responses included, ‘If I find 10,000 ways something won’t work, I haven’t failed because every wrong attempt discarded is just one more step forward.’ AND ‘I have not failed 999 times. I have simply found 999 ways how not to create a light bulb.’
While no one can say these trials did not impact our lives, clinical trials that investigate potentially life-saving treatments DO impact the lives of countless cancer patients, both those participating and those that could benefit in the future. For those who have participated in clinical trials whether to have access to otherwise inaccessible therapies, and/or to further the knowledge about your disease, having those results reported is an important part of participating.
On April 16, 2015, the World Health Organization (WHO) made a statement that they feel researchers should be ethically obligated to publicly disclose results from all clinical trials, including past trials. Details from its Statement on Public Disclosure of Clinical Trials Results called for:
- Results from clinical trials should be publicly reported within 12 months of the trial’s end
- Results from previously unpublished trials to be made publicly available
- Organizations and governments should develop methods to require this
Prior to their public statement, hundreds of people and organizations wrote to the WHO to describe in their own words why they should release a statement that old information should be made available. You can access the full statement from the WHO here.
In 2005, the WHO called for the registration of all interventional clinical trials and established the WHO International Clinical Trials Registry Platform, which includes information on available clinical trials. To acknowledge estimates that up to half of all clinical trials have no reported results and to build onto the efforts of the registry platform, the latest WHO statement expands their view on clinical trials to call for public access to all study results, whether positive, negative, or incomplete.
In an opinion article published in JAMA in January 2015, NIH leaders Hudson and Collins stressed the importance of sharing and reporting the results of clinical trials; “Without access to complete information about a particular scientific question, including negative or inconclusive data, duplicative studies may be initiated that unnecessarily put patients at risk or expose them to interventions that are known to be ineffective for specific uses.” You can access a preview of their commentary here.
About the WHO
The World Health Organization (WHO) is a specialized agency of the United Nations (UN) that is concerned with international public health. It was established on April 7, 1948, and is headquartered in Geneva, Switzerland.
Written by Betsy Dennison 4/29/15
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