Finding A Clinical Trial
Your doctor may be an excellent resource to help identify clinical trials for a particular disease. There are a number of online resources that can also assist in locating clinical trials that are accepting patients.
When looking for a clinical trial, remember to make sure the trial is appropriate for the disease. Most trials also specify an age range for the participants. Additional eligibility requirements must also be met, but these will vary depending on the individual study. If they are not listed on the web, you can contact the health professionals. It is always best to discuss these issues prior to traveling to a center conducting gene therapy.
A great resource for all clinical trials is a website maintained by the US National Institutes of Health www.ClinicalTrials.gov. This website is a registry of clinical trials (gene therapy and non-gene therapy trials) conducted in the United States and around the world. It contains over 50,000 trials being performed in over 150 countries. It includes studies that are sponsored by drug companies and by academic medical institutions, including those sponsored by the government.
ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. Trials can be searched by disease, by type of therapy, and by location. It also contains general information about clinical trials.
Since the ClinicalTrials.gov website is very extensive, only a small percentage are gene therapy studies. Therefore, the search function is useful to identify gene therapy trials of interest. The advance search allows one to use the search term gene therapy and to specify the specific disease under conditions to narrow the search. By selecting Open Studies under the Recruitment field also help narrow the search down.
The National Institutes of Health maintains a detailed website of US clinical gene therapy trials that are conducted at institutions that receive federal grant support (http://www.gemcris.od.nih.gov). Searching GeMCRIS® is not as straightforward as ClinicalTrials.gov, will not have foreign studies, and may not list studies that are performed without federal funds. Also, GeMCRIS® utilizes ClinicalTrials.gov for many details on a particular clinical trial. GeMCRIS™ does provide a unique resource as it may contain information regarding scientific discussions of the clinical trial not otherwise available to the public. One option is to use ClinicalTrials.gov when searching for clinical trials, then use GeMCRIS™ to see if additional information is available on the particular trial in question.
For cancer trials, the National Cancer Institute also maintains a website that provides great resources for all types of cancers. Patient information resources are extensive. The www.cancer.gov website maintains a searchable database of all cancer trials, including gene therapy trials. The trials are also listed on the www.clinicaltrials.gov database.
CenterWatch (www.centerwatch.com) is a Boston-based publishing and information services company that seeks to provide information to patients, pharmaceutical, biotechnology and medical device companies, Clinical Research Offices and research centers involved in clinical research. It contains general information about clinical trials and does maintain a database of ongoing trials, although the list is limited in comparison to the US National Institutes of Health www.ClinicalTrials.gov database.