First and most importantly, the providers at Johns Hopkins are dedicated to providing the very best care possible to all patients — regardless of their interest in participating in clinical research. There is absolutely no requirement to participate in research. We feel strongly that research is our best hope for advancing treatment, and eventually finding a cure for brain tumors. We are therefore committed to performing high quality, comprehensive clinical research.
You are likely to be offered research opportunities at some point during your care at Johns Hopkins. In fact, patients frequently come to us expressly to be involved in our research efforts. Many patients tell us they greatly enjoy their involvement in clinical trials. Often, patients feel they get even more attention and oversight of their care while they are in a clinical trial since there are frequent designated evaluation points over and above standard clinical assessments. Moreover, there are entire staffs appointed to work with patients in clinical trials in addition to the clinical staff coordinating the overall care for the patient. Finally, the diagnosis of a malignant brain tumor is often emotionally devastating and patients may feel that they are being proactive and contributing to a greater good when they participate in a clinical trial.
As mentioned, there are several clinical studies that are observational. In these studies the commitment on the part of the patient is generally minimal. Patients can frequently participate in many of these studies simultaneously. The benefit of participating in these studies is that you are able to add to our knowledge about a rare disease with relatively little inconvenience to you. While these types of studies are unlikely to offer direct benefit to your disease at the time of your involvement, the information gained may be used to develop new therapies to improve survival or quality of life for you or other patients like you in the future.
Involvement in clinical trials generally requires more patient commitment and has more associated risks. Hence, we tend to offer clinical trials to patients who have had recurrence of a tumor that we know to be aggressive and generally incurable with current therapies. It is worth mentioning that some patients wish to start their therapy with experimental agents since there are currently no widely curative treatments for tumors such as glioblastoma multiforme and we offer trials to support this interest.