The Johns Hopkins Prostate Cancer Autopsy Study

Last Revised March 18, 1996

Introductory remarks | Why perform an autopsy study? | Why should you participate? | Effects on funeral plans | How can you participate?

Introductory remarks

Dr Steven Bova and his colleagues are initiating a major effort to gather tissue materials from prostate cancer patients dying with hormone-refractory prostate cancer. Their major objective is to examine and analyze this tissue in order to improve our knowledge of hormone-refractory prostate cancer and (in due course) be able to develop better diagnostic tests and treatments.

Initially, however, they are seeking prostate cancer patients who are prepared to participate in this work by allowing an autopsy to be carried out on their bodies immediately following their demise. This is often not an easy subject for people to discuss. However, for those readers of The Prostrate Cancer InfoLink who might be interested in contributing to this study, or who might know patients who would be willing to contribute to this study, the full details are offered below.

INFORMATION SHEET FOR PATIENTS AND THEIR FAMILIES

Why perform an autopsy study of prostate cancer?

Prostate cancer is the most common cancer diagnosed in men in the United States, and the second most common cause of cancer death among men. Currently there is no durable effective treatment for metastatic prostate cancer. Metastatic prostate cancer has been difficult to study, because tissues are necessary for these studies, and the vast majority of men with metastatic prostate cancer do not undergo autopsy. To find better treatments for men with metastatic prostate cancer, autopsy tissue must be available and studied in considerable detail. Much as organ donation can already help to save lives, participation in this study could help to save lives in the future.

Eligible patients for this study include all men with metastatic prostate cancer who have undergone androgen ablation (with Lupron/leuprolide, Zoladex/goserelin, orchiectomy, Eulexin/flutamide, Casodex/bicalutamide, or other drugs or drug combinations), and whose disease has continued to progress. For logistical reasons, we regret that only men in Maryland, Delaware, southern Pennsylvania (including Philadelphia), the District of Columbia, and northern Virginia can participate.

Why should you participate?

Your participation in this study will help us to find better treatments for men with prostate cancer. There will be no direct benefit to you, except that perhaps (because of your help) we may be able to design tests that will allow men in future generations to know if they are at high risk of developing prostate cancer, and, also because of your help, our ability to develop better treatments for prostate cancer will be vastly improved.

Will participation affect funeral plans?

In cooperation with your family and funeral director, every effort will be made to avoid any delay in funeral plans. Participation will also not affect plans to have an open casket funeral. Your family will still be responsible for funeral costs, but Johns Hopkins will cover the cost of the autopsy and transportation to Johns Hopkins Hospital from your home or another hospital.

How can you participate?

If you are interested in the possibility of participating in this study, please send your name, address, phone number, and the name and phone number of your physician to

or fax this information to

or e-mail Dr Bova at

The researchers will contact you and your physician to discuss the study. Please note that this is a research study only. All information will remain confidential, and patients and families who participate will receive no direct benefit other than trying to help prevent prostate cancer from being a scourge long into the future.