The National Institues of Health (NIH) has just announced the launch of a new Web site dedicated to providing information on clinical trials being conducted around the country.
The Web site (http://ClinicalTrials.gov) will initially include information on more than 4, 000 trials being conducted or sponsored by the NIH. Eventually, the Web site is scheduled to include information on thousands of other clinical trials being conducted by other government agencies.
The purpose of the Web site is to provide patients, families, and members of the public easy access to information about the location of clinical trials, their design and purpose, criteria for participation, and, in many cases, further information about the disease and treatment under study. There will also be links to individuals responsible for recruiting participants for each study.
Clinical trials are medical research studies that seek to evaluate the safety and effectiveness of new drugs, medical procedures, or other means of treating, diagnosing, or preventing diseases. This type of research helps investigators learn how different people respond to medications or other therapeutic approaches, and such investigations may lead to new or improved treatments. Trials are conducted when there is no proven treatment for a specific disease, or to test which treatment works best for a particular disease or condition.
“If we are to continue making the giant strides in diagnosis, treatment and cure of illness that marked the last century, we must have active participation in clinical trials by well-informed volunteers,” Donald A.B. Lindberg, M.D., Director of NIH’s National Library of Medicine, which developed and will administer the new database. “ClinicalTrials.gov is a resource that will benefit trial participants, researchers, health care professionals, and, over time, the general public.”
The Web site grew out of 1997 legislation that required the Department of Health and Humans Services, through the NIH, the broaden the public’s access to information about clinical trials on a wide range of diseases.
Reminder...
The ASA Foundation sponsors the Autism Research Registry, which is a registry of children and adults with autism, and their families, who are willing to consider participating in research projects. The registry was established in 1996 to link scientists with people who live with autism every day. It is confidential and non-binding. Signing up with the registry does not obligate you to particpate in a research project, nor are there any negative consequences in declining.
For more information about the Research Registry, call the ASA Foundation (800-328-8476 ext.114), or visit the ASA Web Site (www.autism-society.org) and click on the key word Research.
The Foundation also co-sponsors the Autism Tissue Program, which is a database of individuals who have pledged to donate their brain tissue for research purposes upon their death. Critical basic research is lagging behind because of a scarcity of brain tissue, scientists can go far beyond the limits of other technologies and study autism at a cellular and molecular level.
For more information about the Tissue Program, call the National Alliance for Autism Research (NAAR) toll-free at (877-333-099), or visit the ASA Web site (www.autism-society.org) or NAAR’s Web site (www.naar.org).
March-April~Advocate page 11
Source: The Advocate
