Research for Community Members

What is research?

Scientists conduct research to investigate the development of new drugs, devices or collect data to contribute to general knowledge on a certain disease or condition.

There are different types of research:

• Research sponsored by a drug company to develop a new drug or biologic to treat a disease
• Research collecting tumor specimens and collecting your personal health information
• Research on new devices to develop and treat a disease (i.e. stents, pacemakers)

Where can I find research studies to participate in?

• The Office of Integrated Research is available to assist you in finding available research studies at AH Glendale, please call (818) 409-8009.

• Therapeutic Areas of Research include:
  • Cardiovascular
  • Ortho/Spine
  • Oncology
  • PK trials
  • Neurology
  • Infectious Diseases
  • OB/GYN
  • Tissue studies
  • Behavioral Health
  • Respiratory
  • Registry
• Ask your doctors if they participate in research or can refer to you to a doctor or research resource.

Current Open Clinical Trials

Open clinical trials at Adventist Health Glendale

Who can answer my questions about the research?

Before participating in research, the principal investigator and/or research team member will meet with you to discuss the research and answer any questions you may have. This is the start of the informed consent process.

What information will I receive before participating in the research?

The principal investigator and/or research team member will meet with you to present the informed consent document. This document explains the details of the research to inform you:

• Participating in research is voluntary
• Explanation of what the study details and procedures and/or tests required
• Risks and benefits (if any) of the research
• What in the research is experimental and what is standard of care
• If you will receive compensation for participating in the research
• If there are any costs to you for participating (i.e., insurance coverage for certain procedures)
• What happens if you are injured

You will receive a copy of the informed consent for your keeping.

Are there questions I should ask before agreeing to participate?

The Office of Human Resource Protections has a printable form that you may take with you when meeting with researchers: Questions to Ask When Deciding Whether to Volunteer for Research

You may want to ask to the principal investigator or research team member:

What is the study about?

What will I have to do?

How long will I have to be in the study?

Who will have access to my private information and how will it be protected?

How is this research different from my usual care?

What are the risks in the study, and will I benefit by participating?

What alternatives are there to participating in the research?

Will it cost me to participate in the research? (Travel, co-payments, insurance coverage)

What if I am injured from participating in the research?

What happens if I want to leave the study before it ends?

Participating in research is voluntary and you may leave whenever you want and for any reason.

You do not have to explain the reason for your leaving, but you may wish to discuss with the principal investigator or a research team member your reason for leaving and if your issue/concern can be addressed.

If you are involved in a drug or device study, you may be asked to return for evaluation. This evaluation will check to see if you have or had any problems from participating in the research, you do not have to return.

What happens when the study ends?

Once you have completed the research requirements (or if you decide to leave the study), this is the end of your participation.

The researcher may share with you information about your participation and if any new information was discovered that might affect your health.

Research results may take years to finalize, and the researcher may not be able to share study results.

Researchers will collect and analyze data from the study and may publish their finding in journals and present their findings at conferences.

Will anyone know that I am participating in research?

Members of the research team and others involved in your care will know you are participating in research.

Information about your participation is kept confidential unless you share this information with family or friends.

Who can I contact about a complaint or concern about a study?

The Institutional Review Board, the hospital committee that reviews and monitors research, receives complaints or concerns from research participants. You may submit the information to:

Tracy Joyce, CIP
Research Compliance Specialist
(818) 409-8522
tracy.joyce@ah.org

If I agree to participate will this information be in my medical record?

Your medical record will have information (i.e. lab test results, radiology images) that are part of the research as explained in the informed consent document.

If you agree to participate in a research study, a signed copy of the consent document and the privacy authorization form may be filed in your electronic medical record (EMR) and your study participation may be added to your EMR. This information will be used for your care and treatment and for healthcare operations, which may include billing and payment.

Federal and state privacy laws give patients the right to access information about their care and treatment contained in their medical record.

During the study, you may not be able to access certain information related to the study in your EMR until the study is complete to ensure that the study remains unbiased. By consenting to participate in the study, you are also consenting to this possible temporary withholding of your research records.

Additional Resources

• Office of Human Research Protections Brochure: “Becoming a Research Volunteer: It’s Your Decision” (Available in English and Spanish)

• Center for Information and Study On Clinical Research Participation: Frequently Asked Questions When Participating in a Clinical Trial

• Department of Health and Human Services: Questions to Ask When Deciding Whether to Volunteer for Research

• Federal Drug Administration (FDA): Clinical Research Versus Medical Treatment

• Association for the Accreditation of Human Research Protection Programs: “For Research Participants” Information regarding the rights of research participants and questions to ask before agreeing to participate in research.

• ClinicalTrials.gov: Resource for patients, family members, health care professionals, researchers and the public with information on both publicly and privately supported research studies by disease and condition.

• National Cancer Institute: Lists the types of cancer, treatment options, and participating research to treat your cancer.

• Food and Drug Administration (FDA): FDA protects the rights, safety and welfare of people who participate in research and oversees clinical trials to ensure they are designed, conducted, analyzed and reported according to federal law and good clinical practice (GCP) regulations. FDA’s regulations and guidance for clinical trials help support efficient medical product development, while assuring trials generate the robust evidence needed to assess product safety and efficacy.