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Bank On A Cure Launch: Frequently Asked Patient Medical Questions

What is myeloma?

Myeloma is a cancer of plasma cells. Plasma cells are antibody-producing cells normally present in very small numbers in the bone marrow. In myeloma, a plasma cell population expands abnormally to large numbers. Myeloma is called “multiple myeloma” because multiple patches or areas of bone marrow are typically affected.

How will Bank On A Cure® affect treatment?

Bank On A Cure will allow researchers to determine sensitivity to specific existing and new treatments, susceptibility to toxic side effects and the contributing factors and/or a predisposition to myeloma. This knowledge may provide genetic tests that can direct the best therapy for each individual patient, and can also lead to new drug development and the potential for a cure.

What is DNA?

DNA is Deoxyribose Nucleic Acid, which is a chain of four different building blocks that are arranged in different sequences that serve as a blueprint for cellular activity. Each nucleic acid is like a “bit” of information in a computer. The combination of the “bits” of information is what creates the blueprint for human cells. Infinite combinations and permutations of these four types of nucleic acid create the diversity of all life. Different sequences make each of individually unique; indeed, every patient has unique characteristics that impact their disease.

What is a gene?

A gene is a short stretch of DNA with a particular sequence with codes for one individual protein molecule. Although everyone has the same proteins, there are minor differences in the code from one person to another. These minor differences create the uniqueness of every individual. A change of a single nucleotide, sometimes called a mutation, or a polymorphism, creates a protein, which can have both a different structure and function than an otherwise identical protein.

What is a SNP?

A SNP is called a “snip” in research jargon: a Single Nucleotide Polymorphism or a change in a single nucleotide to create a unique new protein. These individual proteins lead to the different susceptibilities to cancer, as well as sensitivity to targeted anticancer therapies.

How is DNA collected for testing?

Every cell in the body contains the same DNA. A simple source of cells from which to collect DNA for testing are surface cells from inside the mouth called buccal cells. These cells can be collected by using a simple oral procedure called “swish & rinse.” The advantage of the oral rinse is that samples can be easily collected by most people. Samples are then sent through the mail to a central laboratory for DNA purification and testing.

How will the patient DNA be used?

In the first phase of the project, the DNA is used to validate and establish the comprehensive myeloma DNA bank. In follow-up, targeted clinical trials, individual patient results will be used to determine eligibility. These trials will be designed to select the best treatment for each patient based upon the personal DNA profile.

How will patient confidentiality be protected?

Informed consent is required for participation. This means the patient has agreed to participate and complete confidentiality will be upheld within the HIPAA guidelines and local IRB requirements.

What happens to the DNA information?

Bank On A Cure DNA information is kept confidential as part of the DNA bank. The data from the Bank will be accessible to all interested parties wishing to participate in this international collaborative study, but patient information will not be individually identified. Participation requirements are reviewed and approved by both the Bank On A Cure Scientific Board of Advisors and the local institutional review boards (IRB).

What are the benefits of participation in Bank On A Cure?

People who choose to participate in the Bank will be an integral part of establishing a revolutionary, international, multi-institutional DNA bank which will offer hope to all myeloma patients- current and future. Participants will help Bank On A Cure reach its goals which include:

  • Early intervention strategies
  • New drug development
  • Genetically directed clinical trials
  • Selection of optimal therapy recommendations based upon testing the patient’s personal gene pattern
  • The potential for cure

How do patients participate?

Contact the IMF at www.myeloma.org or by calling 800-452-CURE (2873), or 1-818-487-7455 outside the USA and Canada . Complete kits and confidentiality forms will be sent directly to patients for DNA collection.

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