There is still a vast amount that remains unknown in the world of stroke treatment, particularly when it comes to managing what comes after the initial hospitalization and rehabilitation process. Fatigue, pain, insomnia, anxiety, depression, spasticity, walking deficits, headaches, dizziness, visual symptoms – sometimes our typical approaches to managing these symptoms do not seem to be as effective after a brain injury. For example, patients with thalamic pain syndrome after an injury to a part of the brain known as the thalamus often struggle with uncomfortable pain, tingling, burning, and/or a sensation of “tightness” around an arm or a leg, and they may quickly exhaust all of the available options. Medications that are generally effective for many painful conditions frequently fail to provide relief for this patient population. Once healthcare providers and patients are both out of ideas, the question about available clinical trials arises.
Clinicaltrials.gov is a fantastic resource available for physicians, investigators, and patients, but the problem is – many patients are unaware of its existence. It is a registry of most clinical trials involving human subjects in the U.S., and also includes information about thousands of trials taking place in other nations. Currently, the site contains information about more than 206,000 studies! If one is seeking study information on Fabry disease, a relatively rare genetic disorder that can result in stroke at a young age, as of this post’s publication date 102 results were identified from searching on the term “Fabry.” Nations outside of the U.S. have also created their own registries. In Europe, for instance, the EU Clinical Trials Register serves the same purpose. Similar registries are available in South Korea, Japan, and Australia, to name a few others.
If you feel you are out of therapeutic options, regardless of what medical situation you may face, I encourage you to try an easy search through an online clinical trials registry. This information is free of charge, and can empower patients as they navigate through complex conditions and symptoms. Type the name of your diagnosis in the search bar, regardless of how rare it is, and allow yourself to explore. Not only might it be beneficial for you as a patient to consider a clinical trial if there are no known answers, but the more willingness there is on the part of patients, physicians, and investigators to participate in research, the sooner the answers that have evaded us will come.