–For more information on the LEADS Study, go to “PCA Support Group Lectures & Webinars” to view the video of the Webinar Lecture (10/21/2020) given by both Drs. Victoria S. Pelak & Liana G. Apostolova (scroll to the end of the video for more information on LEADS).
Many patients ask whether there are research studies that they could be involved in since there is no treatment available for PCA. Since studies are constantly changing, the best way to find the answer to that question is to start with web pages that allow for the use of a searchable database for any study related to Posterior Cortical Atrophy, or any other disorder, and this can be found at the following address: https://clinicaltrials.gov/ct2/search/index. This website allows researchers from around the world to register a clinical research study (or clinical trial) and provides an important resource to patients, families, healthcare providers, researchers, and the general public. More information about the background for this website can be found at https://clinicaltrials.gov/ct2/about-site/background.
The site is maintained by the National Library of Medicine at the National Institutes of Health, or NIH, in Bethesda, Maryland. The NIH is a federally-funded US institution that conducts both human medical research and basic laboratory research at its large facility in Bethesda, MD, and the NIH funds research all over the United States with an annual budget of approximately $32 billion dollars. Please be aware that the studies in the database should not be considered “NIH studies”. Thus, if a research study is listed in this database, it does not mean that the research study is supported or reviewed by the NIH. Instead, study information is submitted or registered by those who conduct the study regardless of where the funding is coming from to run the study and regardless of the degree of oversight. The NIH does not review the studies for merit, ethics, or other issues of importance to family members and patients who are interested in participating in the study.
Each study provides information about who is sponsoring the study with funding, and some funding sponsors, such as the NIH, require the research they fund to be listed. Within the information listed for each study will be who is supporting the study with money to conduct it. In some cases it will be the NIH. In other cases it will be private foundations, or pharmaceutical companies, or other governments such as China. Some studies will be for observational purposes only with no research therapeutic (or treatment) intervention. These observational studies have various goals but most have a goal to gather more information about the disorder.
Other studies listed will be research therapeutic trials that include treatments to improve the disease or disease symptoms or to study whether the treatment is safe. At the database search site, a term can be entered to search the database. We recommend starting with the term “Posterior Cortical Atrophy” to begin a search looking for studies with relevance to Posterior Cortical Atrophy.