Clinical Trials are where new drugs or treatments are evaluated, which is ultimately how progress is made in treating diseases. Theories are tested, and through the rigorous scientific process, evaluated. The findings must stand up to peer reviews and be duplicatable. Clinical Trials are done in stages and require rigorous adherence to the approved protocols.
Rare diseases, such as mesothelioma, have more difficulty getting the attention and interest of the scientific community than diseases that affect more people. A rare disease, by the definition of United States health organizations, is any disease affecting fewer than 200,000 people in the United States at any given time. Malignant mesothelioma, a disease with which only 2,500 to 3,000 people are diagnosed with annually, consequentially classifies as a rare disease. For reference, there are over 228,000 people diagnosed with lung cancer each year.
Rare diseases have some common characteristics. The symptoms are often similar to more common diseases. For example, with malignant mesothelioma, many relatively common symptoms can delay a correct diagnosis, leading to misdiagnosis and delayed treatment. Rare diseases also have issues with access to the best care and treatment, since there is such a small population of people with the disease and many medical centers are not equipped with expert researchers in that field.
In the summer of 2019, there are currently 88 clinical trials recruiting worldwide on www.clinicaltrials.gov for malignant mesothelioma. Of those, 57 are recruiting in the United States. Because of the small population of people with malignant mesothelioma, the trials are often offered at multiple locations in order to gain the largest share of trial participants. Texas has 23, followed by 20 in Maryland, 19 in California, 13 in Florida and New York, and 11 in Massachusetts
The clinical trials that are recruiting are varied in the approaches they are taking. Some of the therapies being studied include supplementing current therapies with immunotherapies. New drugs such as Olaparib (generic name: Lyporza) and other drugs known as PARP-inhibitors are also being studied for their treatment potential in mesothelioma. Other studies are collecting specimens and banking the tissue for study; there is a study trying to document the natural progression of the disease by collecting specimens from the same patient at various times; and, there are studies that are trying to improve the staging of the disease in order to pinpoint the best treatment for the various stages of malignant mesothelioma.
There are a number of opportunities for involvement in a clinical trial for people with mesothelioma. All clinical trials are voluntary and require your informed consent, which can be withdrawn at any point that you want. Consider joining, and ask your mesothelioma team if they know of any opportunities that would be right for you.