Clinical trials are carefully conducted research studies meant to determine the safety and effectiveness of a certain treatment. In short, they are the way to know whether a treatment works.
For chordoma patients, some clinical trials may provide an opportunity to receive new, experimental therapies that could be more effective than currently available options. Other clinical trials may provide an opportunity for patients to gain access to clinically available therapies at no cost. In general, care provided through a clinical trial is very methodical and closely monitored by a team of healthcare professionals.
In addition to having the potential to benefit from the latest treatments, chordoma patients who participate in clinical trials contribute to knowledge that can guide therapy for future patients and potentially help identify new ways of treating this rare cancer.
When to consider enrolling in a clinical trial
Clinical trials can be beneficial for patients at any stage of disease. However, because many newly diagnosed chordoma patients have good outcomes after surgery and radiation, clinical trials are most often designed for chordoma patients who have a high risk of recurrence, who already have a recurrence, or who have advanced disease – meaning the tumor has metastasized (spread) or can no longer be treated with surgery and radiation.
|Have you or a chordoma patient you know benefitted from a clinical trial or off-label therapy? If so, we’d like to hear from you so that your experience can inform research and treatment for other patients.|
The Chordoma Foundation’s Medical Advisory Board (MAB) recommends that all patients with recurrent or advanced chordoma consult with their medical team – including an experienced chordoma medical oncologist – about participating in a clinical trial. Though each patient’s situation is unique, in general, the MAB recommends that individuals with recurrent or advanced disease pursue treatment options in the following order of priority:
1. Chordoma-specific clinical trials
Start by considering trials designed specifically for chordoma patients. These trials are likely to have strong scientific justification and to be conducted by teams with significant experience caring for chordoma patients.
2. Other relevant clinical trials recommended by an experienced physician
If you are not eligible for any chordoma-specific trials, ask your oncologist about other clinical trials that may be open to you. The list below includes a number of trials that are relevant to chordoma patients and have been recommended by the Foundation’s MAB. Please be aware that, in addition to the trials below, there may be other trials open to you based on your individual situation.
3. Off-label therapy with evidence of clinical benefit for chordoma patients
While there are currently no drugs approved for the treatment of chordoma, some drugs that are approved for the treatment of other cancers have shown modest activity in chordoma patients. Doctors can choose to prescribe these drugs to chordoma patients if they believe they will be of benefit to the patient (this is called an “off-label” use). If you are not eligible for any clinical trials, consult with your oncologist about off-label use of approved drugs that have been used to treat chordoma patients. These include targeted therapies such as imatinib, erlotinib, sorafenib, and others. A list of published responses to drug therapy for chordoma is available here, and general information about drug therapy for chordoma can be found here.
Below is a list of clinical trials designed specifically for chordoma patients (in blue boxes), as well as other relevant trials recommended by the Chordoma Foundation’s MAB, based on scientific rationale (in grey boxes). Additional information about each trial can be viewed by clicking on the plus signs (+) at the left of the boxes below.
Before enrolling in a clinical trial, it is important to understand and carefully evaluate the potential risks and benefits, and to discuss your options with your doctors. We suggest reviewing this list of questions to ask about any clinical trial you consider. Contact a CF Patient Navigator if you would like assistance considering clinical trial options.
The following trials are designed specifically for chordoma patients, and are currently enrolling unless otherwise noted.
Other trials for adult patients
The following trials are open to patients with multiple tumor types, including chordoma, and are currently enrolling unless otherwise noted. The Foundation’s Medical Advisory Board has determined that these trials may be relevant to chordoma patients based on available scientific evidence.
Other trials for pediatric and young adult patients
The following trials are open to younger patients with multiple tumor types, including chordoma, and are currently enrolling unless otherwise noted. The Foundation’s Medical Advisory Board has determined that these trials may be relevant to chordoma patients based on available scientific evidence.
The Foundation is working to initiate a pipeline of NEW clinical trials specifically for chordoma, separate and apart from the chordoma-relevant trials listed above. For more information about our Clinical Trial Program, see chordomafoundation.org/clinical-trials-program or contact a CF Patient Navigator.
Additional useful information about clinical trials
From the National Cancer Institute:
- What are cancer clinical trials?
- Questions to ask about clinical trials
- Deciding to take part in a clinical trial
- Patient safety in cancer clinical trials
- Clinical trials and insurance coverage – a resource guide
- Booklet: Taking Part in Cancer Treatment Research Studies
From the National Library of Medicine:
The Chordoma Foundation cannot guarantee the completeness of this list of clinical trials, and details about clinical trials are subject to change. We update the information above as soon as the information is made available to us. For more information about clinical trials that you might qualify for, please contact a CF Patient Navigator at chordomafoundation.org/requesthelp, consult with your physician, or visit ClinicalTrials.gov.
The Chordoma Foundation strongly recommends that care and treatment decisions be made in consultation with a physician or other qualified health care professionals who are familiar with your specific health situation. Always seek the advice of your physician for any questions you may have about your medical care. Never disregard professional medical advice or delay in seeking it because of something you read on this website.