This blog intends to guide patients, and/or their caregivers, on how to find cancer clinical trials that may be suitable for them and how myTomorrows can help them along the way.
The third blog in our ‘Introducing Clinical Trials’ blog series, you can read the previous two blogs in the series here – Clinical Trial: Safety Information to consider and Clinical Trial: Phases Explained.
When considering available treatment options, people with cancer may discuss options with their doctor that include treatments on the market as well as treatments that are in clinical research stages. Treatment options that are available through participating in clinical trials may be an option for some cancer patients.
Doctors may search for clinical trial options for their patients. Patients may also search for clinical trials on their own. Before deciding to enroll, patients should seek advice from a doctor who knows about their cancer and medical history.
Each clinical trial has its own criteria for who is eligible to join. Some clinical trials are only testing a treatment on a certain type or stage of cancer. The age of a person, health status, and whether they have had certain treatments in the past can also make them eligible or not eligible for a clinical trial. Patients or their caregivers will need to gather details about the cancer diagnosis such as cancer type, cancer stage, and results of tumor genetic testing, also called biomarker testing. To determine whether someone is eligible for a clinical trial, they will also need to know which treatments they have already received and other aspects of their medical history. As part of the myTomorrows personalized search report described below, the patient’s medical records may be used to find clinical trial options that are relevant to each person.
The more information known about a person’s cancer, the easier it is to find an appropriate clinical trial. For example, if you live in the United States, it might be helpful to use the Cancer Details Checklist provided by the National Cancer Institute (NCI) to collect all the information in one place. The patient’s doctor, nurse, or social worker should be able to help with filling out this checklist. Cancer patients who are looking for clinical trials should keep their Cancer Details Checklist handy when checking which clinical trials, they might be eligible for. This information will also be needed if they contact a clinical trial coordinator.
There is no single list that contains all clinical trials, as they can have a variety of different types of sponsors. A clinical trial sponsor is a person, company, or organization that is responsible for initiating, managing, and financing a clinical trial. Sponsors are also in charge of collecting and analyzing data and are responsible for ensuring that all regulatory and ethical approvals are obtained before initiating the trial. Clinical trials may be funded by non-profit organizations, government organizations, and drug companies. Hospitals and academic medical centers also sponsor clinical trials.
The following resources may be useful for people with cancer who are interested in searching for clinical trials:
NCI-supported clinical trials for cancer take place worldwide including the US. Trained information specialists are available to help with the search through telephone, email, or online chat. Clinical trials listed here are supported by the NCI network including the National Clinical Trials Network (NCTN), NCI Community Oncology Research Program (NCORP), and Experimental Therapeutics Clinical Trials Network (ETCTN). Clinical trials that take place at NCI-Designated Cancer Centers and at the NIH Clinical Center in Bethesda, Maryland are found in this list.
ClinicalTrials.gov is maintained by the National Library of Medicine (NLM) and the National Institutes of Health (NIH) and lists clinical trials for cancer and other diseases. Some trials listed here are also found on the NCI list of trials. Clinical trials sponsored by pharmaceutical, or biotech companies found here may not be on the NCI list. EudraCT (European Union Drug Regulating Authorities Clinical Trials Database) also contains clinical trials on medicinal products. Clinical trial listings are also found on various country-specific databases.
Cancer centers and cancer clinic websites usually list clinical trials taking place. It may be necessary to contact the cancer center clinical trials office to find more information about a clinical trial of interest.
Pharmaceutical and biotechnology company websites may list clinical trials that they sponsor. You may be referred to another organization or company that works in collaboration with the companies to guide patients who are interested in their clinical trials.
Clinical trial listing services are organizations or companies that provide lists of clinical trials as part of their business, but they do not themselves sponsor the clinical trials. Examples include CenterWatch and Nexcura. While the information may be useful, it is important to note that clinical trial listing services may receive fees from drug or biotechnology companies to promote their products. The lists they provide often come from NCI and ClinicalTrials.gov but they may not be updated as regularly. These types of clinical trial listings may be general or disease specific.
Clinical trial listing websites may require a person to register to search their list and to receive contact information for a clinical trial. A clinical trial team can find their information and contact them if they think they may be eligible to enroll.
Cancer advocacy group websites for specific types of cancer either list clinical trials or refer people to organizations that can match patients with clinical trials. People with cancer or their caregivers may contact a cancer advocacy group directly to get help finding clinical trials.
At myTomorrows we help patients or their loved ones to discover and access possible treatments, in just three simple steps.
Step 1 – Book a call and meet your Patient Navigator
Your dedicated Patient Navigator will act as your support and guide from searching for options to giving support on accessing treatment. Our team is medically trained and supervised by medical doctors. Your Patient Navigator will explain any complicated medical information to you in a way that is easy to understand and will be there for you every step of the way. The team speaks several languages.
Book a call here.
Step 2 – Receive your personalized search report
Your personalized search report is bespoken to the patient’s personal medical situation and prepared based on your medical record. We analyze all the medical information and provide you with a complete listing of all relevant and available treatments found in our search. Our technology enables us to search global Clinical Trial databases and collect all information about Clinical Trials and, where appropriate, Expanded Access Programs. We will share this report with you in a patient friendly format which explains all the options. We can also generate a copy for your physician and invite them to our platform to access the information digitally.
Step 3 – Get help accessing treatments
Upon receiving the personalized search report, always discuss the findings with your doctor or physician. If you both decide to pursue a treatment, myTomorrows can help you access it. Our team has many years of experience working with pharmaceutical companies and we know how to get this done. We can help with everything from contacting the drug manufacturer to filling out regulatory paperwork.
The clinical trial protocol summary explains the treatments that are being investigated, the overall goal of the trial, and the locations where the clinical trial is taking place. Bookmark or print protocol summaries for clinical trials that seem like they might be a good fit. For help understanding difficult medical language in the protocol summary, patients and their caregivers can get help from their doctor and other members of their healthcare team. Other information specialists who can help people understand protocol summaries include cancer information specialists at the National Cancer Institute (US) and patient navigators at myTomorrows.
Protocol summaries give you answers to key questions about clinical trials such as the following:
The trial objective is the main purpose of the trial. See some examples below:
To determine eligibility for a clinical trial, cancer patients or their caregivers will need to read the eligibility criteria and see if it match the information about their cancer diagnosis, overall health, and possibly other personal information. Patients should always discuss their options with a Doctor before making a decision.
In addition to weighing the potential risks and benefits to a person’s health that come with joining a clinical trial, potential participants should also think about practical aspects such as the time commitment and traveling that might be involved. Potential participants should find out where the trial will take place and how often they will need to travel. They can ask if travel costs are covered by the trial sponsor. Another thing to consider is how long the clinical study will run, something that may or may not be in the protocol summary.
Once someone has found a clinical trial that they are likely eligible for and that might be a good fit, they may contact the clinical trial team or ask their doctor to do so on their behalf. As a free service, the myTomorrows Patient Navigator team can contact the clinical trial team for patients or provide support during the process. The clinical trial team will have medical questions that a doctor or someone from the patient’s healthcare team may be better able to answer. The clinical trial team may contact people who have registered with a clinical trial listing service.
Contact information should be found in the protocol summary. The protocol chair or principal investigator may be listed with a contact number. Patients interested in participating in a clinical trial should call that number and ask to speak to the trial coordinator. The trial coordinator is the best person to talk to for answering questions from patients and doctors. Their job is to help decide whether a person may be eligible to join the trial. A final decision on eligibility for enrollment in a clinical trial is usually made after meeting a doctor who is part of the clinical trial team.
People considering joining a clinical trial should take time to think about what questions they have and write them down before talking to the clinical trial team or before talking to someone who will speak to the clinical trial team on their behalf. It is important that cancer patients get all their questions answered before deciding. They should make time to think about the potential risks and benefits of the clinical trial and discuss them with their doctor. They should ask their doctor to compare the risks and benefits of the clinical trial treatment compared with the standard treatment. The next step for patients who have decided to enroll in a clinical trial is to make an appointment to visit the clinical trial team.
Patients or their caregivers can search for cancer clinical trials on websites of government organizations, cancer centers, cancer advocacy groups, clinical trial listing services, and drug/biotechnology companies. In addition, myTomorrows offers a free personalized search and support service for patients and caregivers. Before searching, patients need to gather information about their cancer and previous treatments. Clinical trial protocol summaries provide patients and their healthcare team with the purpose of the clinical trial, eligibility criteria, travel and time commitment, and contact information for the clinical trial team. Patients should get all their questions answered by the clinical trial team and their doctor. Their doctor can help them weigh the risks and benefits and help them decide if the clinical trial is right for them.
To learn more about possible clinical trials and get help finding clinical trials, schedule a call with a myTomorrows Patient Navigator. Find out more here.
The information in this blog is not intended as a substitute for a medical consultation. Always consult a doctor before receiving a diagnosis or treatment.
The myTomorrows team
Anthony Fokkerweg 61-2
myTomorrows Team 25 Jul 2023