Decisions about treatment for cancer or another serious disease, including whether or not to participate in a study, can be overwhelming. The Internet makes searching for clinical studies easy and fast.
If you are considering participating in a study and want to know more, there are many websites that can help you. But the volume of search results can be daunting, information about studies is sometimes highly technical, and some websites leave out vital details.
Cautions when researching studies online
As you review clinical studies on the Internet, ask yourself these questions:
- Does the website indicate whether the study is Phase I, Phase II, Phase III, or Phase IV? The study phase gives you an idea of how far along a treatment is in the clinical study process and which questions the researchers are trying to answer with the study.
- Does the website disclose the risks of participating in the study? If not, ask for this information or do more digging so you can consider the risks before making a decision about whether to participate.
- Does the website’s list of benefits of participation include financial factors like free parking or payment for taking part in the study, rather than focusing on the medical benefits to patients? While financial incentives might be nice, be sure to weigh all the risks and benefits of participating.
Be cautious about information you find online, and if you have questions be sure to talk with your Seattle Cancer Care Alliance (SCCA) treatment team. They can help you make an informed decision about whether a particular study is right for you.
These links can help you find general information about clinical research as well as specific clinical studies.
American Cancer Society (ACS)
ACS, a nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem, has a wealth of information about all kinds of cancers. In addition, ACS is the largest nongovernmental source of funds for cancer research in the United States. Learn more about ACS’s commitment to research.
ClinicalTrials.gov, a service of the U.S. National Institutes of Health (NIH), is a registry and results database of publicly and privately supported clinical studies conducted around the world. It provides general information about clinical studies and allows users to find studies.
National Cancer Institute (NCI)
NCI is part of NIH and is the U.S. government’s principal agency for cancer research and training. NCI conducts and supports programs in research, training, and education in the cause, diagnosis, prevention, and treatment of cancer, as well as the ongoing care of people with cancer and their families. The clinical trials section of NCI’s website includes a list of more than 12,000 ongoing clinical studies, general information about clinical studies, and results summaries of recently completed clinical studies, among other information.
NCI’s Cancer Information Service is a free, confidential service that can give you information about clinical studies, including helping you search for clinical studies that may be appropriate for you. To contact the service:
- Call (800) 4-CANCER (800-422-6237), Monday through Friday, 5 a.m. to 5 p.m.
- Chat online at LiveHelp, Monday through Friday, 5 a.m. to 8 p.m.
- Email anytime using the NCI contact form.
Office for Human Research Protections (OHRP)
This site may be helpful if you want to understand more about what goes on behind the scenes to safeguard people who take part in studies. OHRP provides leadership in the protection of the rights, welfare, and well-being of subjects involved in research conducted or supported by the U.S. Department of Health and Human Services. OHRP helps ensure this by providing clarification and guidance, developing educational programs and materials, maintaining regulatory oversight, and providing advice on ethical and regulatory issues in biomedical and social-behavioral research.
U.S. Food and Drug Administration (FDA)
FDA is responsible for protecting the public health by regulating foods, drugs, vaccines, biologics, blood products, medical devices, electronic products, cosmetics, veterinary products, and tobacco products. FDA is also responsible for advancing public health by helping to speed innovations that make medicines more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medicines and foods to maintain and improve their health.
Websites specific to children
Children’s Oncology Group (COG)
With more than 8,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe, COG is the world’s largest organization devoted exclusively to childhood cancer research. More than 90 percent of children diagnosed with cancer in the United States are cared for at COG member institutions. COG’s website has a section about research. You can also find information on diagnosis, treatment, coping with cancer, and follow-up care for children with cancer and their families.
CureSearch for Children’s Cancer
CureSearch is a national nonprofit foundation that funds children’s cancer research and clinical studies and provides education and resources for children with cancer and their families and friends. You can find information about research studies, as well as children’s cancers, tests, procedures, treatments, emotional support, and more on the CureSearch website.
Websites specific to older adults
National Institute on Aging (NIA)
NIA, which is part of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. The institute’s information on clinical trials and older people might be of interest if you’re considering participating in a study.
This website, developed for older adults by NIA and the National Library of Medicine, features up-to-date aging-related health information that is easy to access and easy to understand. Visit the section about participating in clinical trials.