Tissue Donation

Why are tissue samples from people with FA so important?

There is a dire need to better understand the cancers that develop in people with Fanconi anemia (FA) so that we can develop effective ways to prevent and treat them. The best way to understand FA cancers is to study the progressive development of tumors by analyzing human tissue before tumor cells form, and from the actual tumor. Tissue samples from biopsies and tumors removed by surgery from people with FA are critical for advancing research and clinical care. 

What are the types of tissue samples that are needed? 

1. Biopsy samples:  Tissue collected from biopsy samples can be obtained at the moment the biopsy occurs or at any time post-biopsy, with patient approval, as long as the donation does not interfere with pathology review. 

2. Archived samples: Tumor tissue collected from past surgeries can be obtained from the hospitals where the surgery was performed with patient approval. These archival tissues can be obtained any time after surgery.  

3. Fresh samples: Tumor tissue collected at the time of surgery is the sample type most advantageous for research. Samples taken from tumors immediately upon removal can be used to set up renewable resources to study these tumors. It is paramount that FARF or the tumor collection team know when the surgery will be scheduled, and most preferably, as soon as surgery is being considered as the main treatment option. This allows timely coordination of regulatory affairs and tissue shipment. In some cases, the research team will need to travel to the hospital to process the tissue on site.  

What will scientists do with the tissue samples? 

  1. Maintain patient confidentiality during use of all donated tissues used for research
  2. Use the most up-to-date and state-of-the-art technologies to study donated tissues to gain an overall understanding of the tumors
  3. Create tumor models in the laboratory setting that will be used to test new prevention or therapeutic modalities
  4. Correlate tumor characteristics with therapeutic response in patients 

The Fanconi Anemia Research Fund is currently supporting research on FA cancers through a collaboration with Dr. Agata Smogorzewska at The Rockefeller University. If you or your loved one have had biopsies or surgery to remove a tumor in the past, would like to donate tissue from an upcoming biopsy or surgery, or would like more information on the tissue donation process, please contact Andrea Ronan at andrea@fanconi.org or call 541-687-4658x402.  

In collaboration with: 

Dr. Agata Smogorzewska 

The Rockefeller University 

International Fanconi Anemia (IFAR) Registry