Genetic Research Studies: Where to Look

The goal of genetic research studies is to understand the role of genes in disease, as well as understand how the interaction between those same genes and the surrounding environment plays a role in the disease process. Genetic research studies are voluntary and confidential. A person who participates in a research study may not necessarily obtain specific health information or test results for that person or for his or her family from a study (though in some cases such information is available). However, participation helps scientists identify and understand key genetic factors that are involved in the development of human diseases and the biology of the disease process. This knowledge can lead to improved disease management and treatment.

Information to Consider First
It is important to consider information such as benefits and risks of participating in a genetic research study, as well as involvement of other family members and study results. The Centers for Disease Control and Prevention provides an online brochure in English and Spanish entitled "Taking Part in Research Studies: What Questions Should You Ask?" The U.S. Food and Drug Administration has information on what to expect when participating in a clinical trial entitled " Clinical Trials of Medical Treatments: Why Volunteer?"

Begin Your Search

There are a number of places to search for and locate genetic research studies on the internet: several are listed below.

• The NIH Office of Rare Diseases has a comprehensive list of research and clinical trials links at: http://rarediseases.info.nih.gov/asp/resources/rsch_trials.asp


• Information on Clinical Trials & Human Research Studies from the U.S. National Institutes of Health: http://www.clinicaltrials.gov/


• National Human Genome Research Institute lists clinical studies conducted to gain a better understanding of how genes can cause or influence disease: http://www.genome.gov/10004414


• The NIH Clinical Center, a national resource for clinical research, provides an online newsletter for persons interested in participating or who have participated, in a clinical study: http://www.cc.nih.gov/participate/healthyvolunteers.shtml
  There is also a searchable database of current studies at the center: http://www.cc.nih.gov/


• Orphanet provides an online search engine for clinical trials and research studies taking place in Europe and surrounding countries: http://www.orpha.net/consor/cgi-bin/ResearchTrials.php?lng=EN


• CenterWatch is a clinical trials listing service that provides trials listings, drug directories, and patient education: http://www.centerwatch.com/
  
• The Food & Drug Administration lists researchers studying rare diseases that have difficulty finding enough people who have the disease and are eligible and willing to participate in their studies: http://www.fda.gov/orphan/grants/patients.htm/


• Type "genetic research study" into your favorite search engine.


• Many universities with genetics departments conduct research. Go to your local university's website and search for "genetic research studies" or "research studies".


• Ask the clinical geneticist or genetic counselor you are working with if they are aware of genetic research studies.