Last update: 11/01/2007

Before you have the biopsy to determine if you have a lymphoma or to evaluate tissue to see if you've had a relapse, contact your surgeon or oncologist and specify that you want a portion of the extra tissue snap frozen using CLIA standards. 

	to determine if you are eligible for a clinical trial (now or in the future) testing an agent that targets a pathway that might be present in the tumor)
	to produce a patient-specific cancer vaccine, should one of the three  vaccines coming up for approval within the year wins approval.
	to do advanced diagnostics, to determine if you have high or low risk lymphoma  (or as control tissue if negative for lymphoma!)
	to determine your eligibility to use approved targeted agents in future.

WHERE / HOW can I have this done?

One way: Participate in the Genome Expression Study  (highly recommended when it's time for a biopsy) Rationale: The observed variability in the clinical course of follicular lymphoma, along with  the diverse range of therapeutic options available, necessitates accurate prognostic  stratification of the individual patient. Conditions: Lymphoma; Leukemia; Multiple Myeloma; Lymphoid Malignancies Locations:    Nebraska Medical Center in Omaha,     Southwest Oncology Group centers- see for MANY centers in USA: swog.org    the British Columbia Cancer Agency in Vancouver, Canada;    the Norwegian Radium Hospital in Oslo, Norway;    the University of Würzburg in Würzburg, Germany;    the University of Barcelona in Barcelona, Spain; and    St. Bartholomew's Hospital in London, England. Background:  The Leukemia and Lymphoma Molecular Profiling Project (LLMPP),  a collaboration of researchers in the United States, Canada, and Europe NCI investigators  are working with researchers at the University of Nebraska Medical Center in Omaha  to define the gene expression profiles of all types of human lymphoid malignancies.  The project is supported by an international collaboration ...  The LLMPP uses  "Lymphochip" cDNA (complementary DNA) microarrays, which are enriched in genes  that are expressed in and/or function in lymphocytes. Lymphochip microarrays allow  measurement of the RNA expression levels of the represented genes. Gene expression  profiles developed as a result of this project may someday be used for disease classification  (diagnosis), prognosis, and therapy selection. Already, results from the LLMPP indicate  that these profiles can improve diagnostic accuracy and provide prognostic information.  The LLMPP is initiating a multicenter clinical trial to evaluate a lymphoma diagnostic chip,  called LymphDX, which was designed by the company Affymetrix in collaboration with  NCI researchers using LLMPP data. The study will demonstrate the feasibility of  disseminating the LymphDX microarray technology to all of the participating sites and  will also evaluate the diagnostic utility of the LymphDX chip in a prospective study. Source: cancer.gov

IMPORTANT:  Be sure to request a CLIA Certified Laboratory  - "defined as clinical diagnostic laboratories certified by the DHHS Health Care Financing Administration ... as revised by the Clinical Laboratory Improvement Amendments (CLIA)". http://ohsr.od.nih.gov/info/sheet17.html 

Also see Rationale, below. 

For centers that are more likely to snap freeze tissue at biopsy:

	See The Cooperative Human Tissue Network
	See NCI-designated cancer centers - Cancer.gov  (in state order. Scroll down to list)
	SWOG centers in USA: swog.org
	Locate CLIA accredited laboratories by state:  cms.hhs.gov  pdf
	Locations participating in LLMPP:   Nebraska Medical Center in Omaha,     Southwest Oncology Group centers- see for MANY centers in USA: swog.org    the British Columbia Cancer Agency in Vancouver, Canada;    the Norwegian Radium Hospital in Oslo, Norway;    the University of Würzburg in Würzburg, Germany;    the University of Barcelona in Barcelona, Spain;    St. Bartholomew's Hospital in London, England.

Send comments by clicking here

Advocate for the routine snap freezing of lymphoid tissue at each patient biopsy.

Provide the rationale and notification of expectation to: 
 

	treating physicians who refer patients for biopsies,
	clinical investigators and scientists who can advise us about where to put our efforts.
	cancer centers that must store the tissue, or package and ship the tissue elsewhere,
	surgeons who perform the procedures,
	pathologists who first receive the tissue,
	and the public who must inquire and know what to ask for when scheduled for lymphoid tissue biopsies.

We will develop and distribute educational material so that the public and our representatives can understand the potential of this technology and the need to fund and support it. 

	Identify research centers that will receive the tissue, or perform genetic testing on it.
	Identify methods to safeguard the privacy of patients who donate lymphoid tissue and provide clinical history.
	Identify and provide incentives for patients to donate lymphoid tissue and provide clinical history.
	Advocate for the creation of a centralized lymphoid tissue data bank at the NCI that will receive and evaluate tissue from outside sources.
	Advocate for open access to tissue and related data to help advance clinical progress.

	Enables scientist to more rapidly identify the gene expressions that distinguish normal from malignant cells and assist in the "development of molecularly targeted therapies that have specificity and potency for defined cancer types." 4
	Enables scientists to link clinical behavior (how aggressive or indolent the cancer is likely to be ) to gene expression, and thus better advise patients about treatment selection and timing. Currently, the variable clinical course of patients given the same diagnosis stems, in part, from the underlying molecular diversity among their tumors. 4
	Enables identification of viral factors that may be present and may contribute to causing, promoting, or maintaining malignant behavior of lymphoma cells.
	Enables scientists to discover how genes function in immune cells and apply to the treatment of numerous diseases.
	Enables retrospective testing to correlate genetic expression with individual responses to treatments. The potential benefits will enable doctors or researchers to:   select treatments that are far more likely to benefit the patients spare patients from the side effects of ineffective treatments identify patients in need of experimental approaches to treatment 1 reduce health costs by enabling rational treatment selection, instead of by wasteful trial and error identify genes in tumors that lead to treatment resistance select patients most likely to benefit from investigational drugs in clinical trials “Presently we are overlooking effective treatments for some people, while administering ineffective and toxic treatments to others based on studies conducted with ill-defined aggregates of patients.” – DF.
	Multiple samples from the same patient,    enable the identification of changes to gene expression and other tumor characteristics in response to treatments and over time. enable the identification of changes to gene expression and other tumor characteristics that correlate to refractory disease, or transformation to aggressive disease, or the lack thereof.
	Enable identification of tumor-associated antigens that can form the basis for therapeutic cancer vaccines.
	Enable discovery of cells in the lymphoid microenvironment that may be promoting or inhibiting lymphomas.
	Enable production of patient-specific therapeutics, such as cancer vaccines or therapeutic antibodies.