What to Expect
This is your first time, but It’s not ours.
No one is ready to receive a brain tumor diagnosis, yet the National Cancer Institute estimates that 66,300 people will be diagnosed for the first time this year alone. In fact, there are over 688,000 people in the United States who are currently managing life with a brain or central nervous system tumor. As the nation’s largest early-phase clinical trials program for brain tumor patients, the Ivy Brain Tumor Center routinely accommodates patients from around the world.
Everyone’s experience with a brain tumor is different, but the feelings of panic, fear, and stress are shared collectively by those receiving their diagnosis – and that’s where we come in. No one should have to cope with a brain tumor diagnosis alone, and patients should have power and control over the decisions being made. We encourage all of our patients to be our partners and to have an honest relationship with our team of experts to help redefine their sense of trust and control. One of our main goals at the Ivy Center is to give you the necessary tools to make an informed decision regarding your treatment options.
Each Ivy Phase 0 study is unique in enrollment criteria. We encourage you to submit a trials screening request to determine your eligibility. Initial patient assessments are completed remotely, using a variety of communication portals, including video teleconferencing. Our secure trials screening portal will ask you to provide basic contact information, medical history, diagnostic imaging, and any other relevant documents. Once a trials screening request is submitted, an Ivy Navigator will reach out to you within two business days to request any additional information necessary to complete the initial assessment.
Based upon a combination of clinical, demographic, and tumor genetics criteria, eligible patients are invited for additional, in-person consultation and, together with our brain tumor patient navigators, will then embark upon the clinical trial planning process.
Each patient will need to provide informed consent to participate in a clinical trial as a first step. Informed consent is the process of providing key information about a research study in order to decide whether to accept the option of entering or not. This process continues throughout the entire study. The consent document will include details of the study, its purpose, duration, tests or procedures performed as part of the research and contact information for further information. Risks and potential benefits are included in the document. Taking part in a clinical trial at the Ivy Brain Tumor Center is voluntary and you can leave the study at any time.
If you consent to participate, the next step is to test available tumor tissue to see if it meets specific genetic criteria. If it does, you will be invited to complete a full screening visit. If eligible, the research team will coordinate with the surgical team to create your visit schedule. The number of visits will vary between trials.
If you are coming to us from outside the Phoenix area, your length of stay will depend on your unique circumstances and treatment plan. Patients and families may need to stay for several days on the first visit and up to six weeks if the patient advances to a Phase 2 clinical trial. Be sure to check out Planning for Your Visit for information on lodging and transportation.
Each patient’s circumstances are inherently different, but our treatment philosophy emphasizes transparency and a commitment to investigate every possible avenue for experimental therapy. While there are many facilities offering brain tumor clinical trial options across the United States, the protocols and experimental therapies in our clinical trials program are only available at the Ivy Brain Tumor Center and our clinical affiliates.
Who You’ll Meet
Our knowledgeable Ivy Navigators will guide you through every step of the trial screening process and clearly communicate important information so you can make informed decisions based on your unique circumstances.
The Medical Secretary handles all the scheduling and works with patients and their caregivers to develop an itinerary of clinic appointments and surgery date. For patients coming to us from outside of the Phoenix area, we will provide information on where to stay near the Ivy Brain Tumor Center and may assist with travel arrangements as needed to ensure each patient’s journey is as smooth as can be.
Clinical Research Nurse
Each time you visit the Ivy Center, you will meet with one of our Clinical Research Nurses. They are your main point of contact throughout the Phase 0 clinical trials process, and most importantly they serve as your advocate.