Frequently Asked Questions

Following are the benefits of creating a profile.

Find clinical studies

Find the open clinical studies at UMass Medical School through our easy-to-use web-based search tool and our well-organized browsing list.

Show interest in studies

Indicate an interest in selected studies by simply clicking the I’M INTERESTED button. It’s quick and easy to complete a contact form so study teams can reach out to you directly with details about participation in studies.

Bookmark the studies

Bookmark the studies that interest you and review them later. Bookmarking makes it easier to save, share and manage the studies that interest you.

Study recommendation

Create a profile to get e-mail notifications of new study opportunities from Conquering Diseases based on the information you provide. Tell us what you’re looking for and we make it easy to find the studies most relevant to you.

Share the studies

Share any study directly from the site with your friends, family or healthcare provider through social media.

Learn about studies

Learn about clinical research, hear and watch stories of the experience from people who have previously participated in research studies. We also provide educational resources to help patients and families learn about clinical studies.

To create a profile:

• Go to Registration page
• Enter your information: First Name, Last Name, Email, Phone no., Password
• Check your email and click on the confirmation link
• Complete your profile by entering your Basic information and Study interests.

To change my study notifications:

• Go to My Profile > Study Interest
• Click Edit
• Type or select the conditions that interest you

If you wish to opt out of notification email:

• Go to My profile > Email Notification
• Click Edit
• Select NO for Email me about new studies

To change my study notifications:

• Go to my profile > Account > Account Settings
• Click Deactivate My Account

Note: Deactivation of an account will remove all the bookmarks and recommendations. It will also clear all information from the profile including basic information and study interest. We will not be able to recover any information once the account has been deactivated.

Clinical research is medical research that involves people like you. When you volunteer to take part in clinical research, you help doctors and researchers learn more about disease and improve health care for people in the future. Clinical research includes all research that involves people. The goal of clinical trials is to determine if these treatment, prevention, and behavior approaches are safe and effective. People take part in clinical trials for many reasons. Healthy volunteers say they take part to help others and to contribute to moving science forward. People with an illness or disease also take part to help others, but also to possibly receive the newest treatment and to have added (or extra) care and attention from the clinical trial staff. Clinical trials offer hope for many people and a chance to help researchers find better treatments for others in the future.

This information courtesy of NIH Clinical Research Trials and You

Clinical trials follow a plan known as a protocol. The protocol is carefully designed to balance the potential benefits and risks to participants and answer specific research questions. A protocol describes the following:

• The goal of the study
• Who is eligible to take part in the trial?
• Protections against risks to participants
• Details about tests, procedures, and treatments
• How long the trial is expected to last
• What information will be gathered

A clinical trial is led by a principal investigator (PI). Members of the research team regularly monitor the participants’ health to determine the study’s safety and effectiveness.

This information courtesy of NIH Clinical Research Trials and You

Most, but not all, clinical trials in the United States are approved and monitored by an Institutional Review Board (IRB) to ensure that the risks are reduced and are outweighed by potential benefits. IRBs are committees that are responsible for reviewing research in order to protect the rights and safety of people who take part in research, both before the research starts and as it proceeds. You should ask the sponsor or research coordinator whether the research you are thinking about joining was reviewed by an IRB.

This information courtesy of NIH Clinical Research Trials and You

Informed consent is the process of providing you with key information about a research study before you decide whether to accept the offer to take part. The process of informed consent continues throughout the study. To help you decide whether to take part, members of the research team explain the details of the study. If you do not understand English, a translator or interpreter may be provided. The research team provides an informed consent document that includes details about the study, such as its purpose, how long it’s expected to last, tests or procedures that will be done as part of the research, and who to contact for further information. The informed consent document also explains risks and potential benefits. You can then decide whether to sign the document. Taking part in a clinical trial is voluntary and you can leave the study at any time.

This information courtesy of NIH Clinical Research Trials and You

Risks and potential benefits

Clinical trials may involve risk, as can routine medical care and the activities of daily living. When weighing the risks of research, you can think about these important factors:

• The possible harms that could result from taking part in the study
• The level of harm
• The chance of any harm occurring

Most clinical trials pose the risk of minor discomfort, which lasts only a short time. However, some study participants experience complications that require medical attention. In rare cases, participants have been seriously injured or have died of complications resulting from their participation in trials of experimental treatments. The specific risks associated with a research protocol are described in detail in the informed consent document, which participants are asked to consider and sign before participating in research. Also, a member of the research team will explain the study and answer any questions about the study. Before deciding to participate, carefully consider risks and possible benefits.

Potential benefits

Well-designed and well-executed clinical trials provide the best approach for you to:

• Help others by contributing to knowledge about new treatments or procedures.
• Gain access to new research treatments before they are widely available.
• Receive regular and careful medical attention from a research team that includes doctors and other health professionals.

Risks

Risks to taking part in clinical trials include the following:

• There may be unpleasant, serious, or even life-threatening effects of experimental treatment.
• The study may require more time and attention than standard treatment would, including visits to the study site, more blood tests, more procedures, hospital stays, or complex dosage schedules.

This information courtesy of NIH Clinical Research Trials and You

If you are thinking about taking part in a clinical trial, you should feel free to ask any questions or bring up any issues concerning the trial at any time. The following suggestions may give you some ideas as you think about your own questions.

The study

• What is the purpose of the study?
• Why do researchers think the approach may be effective?
• Who will fund the study?
• Who has reviewed and approved the study?
• How are study results and safety of participants being monitored?
• How long will the study last?
• What will my responsibilities be if I take part?
• Who will tell me about the results of the study and how will I be informed?

Risks and possible benefits

• What are my possible short-term benefits?
• What are my possible long-term benefits?
• What are my short-term risks, and side effects?
• What are my long-term risks?
• What other options are available?
• How do the risks and possible benefits of this trial compare with those options?

Participation and care

• What kinds of therapies, procedures and/or tests will I have during the trial?
• Will they hurt, and if so, for how long?
• How do the tests in the study compare with those I would have outside of the trial?
• Will I be able to take my regular medications while taking part in the clinical trial?
• Where will I have my medical care?
• Who will be in charge of my care?

Personal issues

• How could being in this study affect my daily life?
• Can I talk to other people in the study?

Cost issues

• Will I have to pay for any part of the trial such as tests or the study drug?
• If so, what will the charges likely be?
• What is my health insurance likely to cover?
• Who can help answer any questions from my insurance company or health plan?
• Will there be any travel or child care costs that I need to consider while I am in the trial?

Tips for asking your doctor about trials

• Consider taking a family member or friend along for support and for help in asking questions or recording answers.
• Plan what to ask — but don't hesitate to ask any new questions.
• Write down questions in advance to remember them all.
• Write down the answers so that they’re available when needed.
• Ask about bringing a tape recorder to make a taped record of what's said (even if you write down answers).

This information courtesy of Cancer.gov.

Ethical guidelines

The goal of clinical research is to develop knowledge that improves human health or increases understanding of human biology. People who take part in clinical research make it possible for this to occur. The path to finding out if a new drug is safe or effective is to test it on patients in clinical trials. The purpose of ethical guidelines is both to protect patients and healthy volunteers, and to preserve the integrity of the science.

Informed consent

Informed consent is the process of learning the key facts about a clinical trial before deciding whether to participate. The process of providing information to participants continues throughout the study. To help you decide whether to take part, members of the research team explain the study. The research team provides an informed consent document, which includes such details about the study as its purpose, duration, required procedures, and who to contact for various purposes. The informed consent document also explains risks and potential benefits. If you decide to enroll in the trial, you will need to sign the informed consent document. You are free to withdraw from the study at any time.

IRB review

Most, but not all, clinical trials in the United States are approved and monitored by an Institutional Review Board (IRB) to ensure that the risks are minimal when compared with potential benefits. An IRB is an independent committee that consists of physicians, statisticians, and members of the community who ensure that clinical trials are ethical and that the rights of participants are protected. You should ask the sponsor or research coordinator whether the research you are considering participating in was reviewed by an IRB.

This information courtesy of NIH Clinical Research Trials and You

• Informational Videos
• Questions to Ask
• Protecting Research Volunteers

• UMass Research news—https://www.umassmed.edu/news/research/
• Visitors guide—https://www.umassmemorialhealthcare.org/umass-memorial-medical-center/patients-visitors
• Giving to UMass Medical Center—https://w3.umassmed.edu/onlinedonation/