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Spring 2004 Volume 5, Issue 10:
Why Bank On A Cure®?
Every myeloma patient is unique. Treatment should be too.
04.26.04
EVERY MYELOMA PATIENT IS UNIQUE. TREATMENT SHOULD BE TOO.

What is the purpose of the Bank On A Cure study?
Doctors and researchers around the world are united in the opinion that the potential cure for cancer lies somewhere in the better understanding of the genetic makeup of patients. The Bank On A Cure study aims to provide a unique opportunity to develop genetic and clinical correlations that will allow better treatment response and performance, improved treatment choices, and possibly future preventative and curative strategies for patients with multiple myeloma.

Who is organizing and funding Bank On A Cure?
This project is being organized by the International Myeloma Foundation. The IMF is working closely with two labs, one based in the USA and one based in the UK. The Bank On A Cure study is being funded through generous donations from IMF members and supporters.

Who has reviewed this study?
This study was designed by a multi-disciplinary team of doctors, researchers, patients, and lay people. It has been reviewed and approved by appropriate ethics committees.

Who is taking part in this study?
Worldwide, up to 10,000 individual DNA samples will be collected from persons diagnosed with multiple myeloma who fit the entry criteria required to take part in this study.

Do I have to take part?
No. The decision is entirely yours. If you choose not to take part, this will not affect your current treatment and it will not affect the relationship you have with your doctor. Even if you decide to take part now, you are free to withdraw at any time in the future without giving any reason and again, this will not affect the relationship you have with your medical team.

What will happen if I do take part?
After you have read all the information you need and have agreed to take part in this study, you will be required to provide a DNA sample derived from a simple mouthwash. If you have already provided a DNA sample as part of another clinical study, you will be required to give consent to allow some of that DNA to be used in this study. Regardless of when you have given your DNA sample, you will be required to complete a simple patient questionnaire. You might be asked to provide follow-up information when required. Your doctor will also receive a questionnaire regarding your medical history and current treatment.

Dr. Brian Van Ness and grad student with
the dedicated robotic DNA processing machine.

What is being tested?
Your DNA will be tested and analyzed to determine the characteristics of the behaviour of a number of specific genes that are known to be implicated in the onset of myeloma and which may influence treatment outcome and performance in individual cases.

What are the alternatives?
Due to the nature of this type of study and in the absence of a suitable similar or comparative study, there is no alternative. However, this puts the patient at no disadvantage or harm whatsoever, and will not affect treatment in any way.

What are the disadvantages of taking part?
There are no side effects at all from taking part in this study and there are no disadvantages that have come to light to date.

What are the benefits of taking part?
As with most studies, results cannot be guaranteed. However, it is hoped that results from this study will allow doctors to tailor treatments specifically to individual patients based on their genetic makeup. This will help to maximize response and outcome and to reduce side effects. It is also hoped that this study will lead to preventative and curative strategies in the not-too-distant future.

What if new information becomes available?
New information will only add value to this project and will not affect DNA donors in any way.

What happens when the research stops?
It is hard to predict when a research project like this will stop—if ever. DNA banks will provide a continual source of information and it is likely that this type of research will become standard clinical practice and will be integrated into everyday care of patients.

Will my taking part in this study be kept confidential?
All information that is collected about you during the course of the research will be kept strictly confidential. Any information about you which is used or leaves the hospital will have your name and address removed so that you cannot be identified from it. It is important to understand that specific results and information about your own case will not be available.

What will happen to the results?
The results of this study will be published in scientific journals and presented at scientific meetings.


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