Related Topics
 

Participating in Research Studies



We understand that this is a very stressful time for you and your child. Your family faces many changes, questions, and decisions about treatment and making the best choices for your child. We at St. Jude want you to know that your child’s care is our greatest concern. We will explain all treatments and tests to you and to your child every step of the way. 


What is clinical research and what does it mean to my child and my family?

Clinical research helps scientists learn more about illnesses or health conditions so they can develop and improve treatments. Research studies involving people are called clinical trials. These trials follow carefully designed plans called protocols to decide if new treatments are safe and work well. If a treatment is found to be safe and effective after it has been carefully tested in many clinical trials, the treatment may be approved by the Food and Drug Administration (FDA).

Two St. Jude committees look carefully at each protocol before any research begins. The Scientific Review Committee makes sure that the study will add to our knowledge about the causes and cures for serious diseases. The Institutional Review Board (IRB) reviews the ethics and safety of each study, and protects the rights and welfare of those who take part in the studies. The IRB is made up of scientists, non-scientists, and community members.


How will I know what to expect before and during the research study?

Informed consent is an ongoing process to help parents and children understand what is involved in taking part in a research study. The research team will explain these items to you and your child: 


What are my rights?

If your child or you are asked to take part in a research study, you have the right to know the following:


You also have the right:


If you have questions, please ask!

Please feel free to ask questions before you agree for your child to take part in a research study. We know that you and your child probably will think of other questions later. Please ask questions of your doctor, nurses, and social worker at any point during the study.

The hospital also provides a research participant advocate who advocates for the rights of research participants (people who take part in research studies). The research participant advocate will answer questions and advise you about your rights in research studies. She may be reached at 901-595-4644. The Institutional Review Board Chair also will answer questions about your rights. You can reach the IRB Chair at 901-595-4357 or by e-mail at hsp-1@stjude.org. Outside the Memphis area, call us toll-free at 1-866-JUDEIRB (1-866-583-3472).

To learn more about clinical research, please visit the Linda R. Hajar Family Resource Center located on the second floor of Patient Care Center. The Web sites listed below also provide useful information on health conditions, clinical research, and your rights if you choose to take part in research:

www.stjude.org/patientsandparents

http://cancernet..nih.gov

www.centerwatch.com/patient/backgrnd.html

www.curesearch.org