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.
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.
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 firstname.lastname@example.org or call 541-687-4658x402.
In collaboration with:
Dr. Agata Smogorzewska
The Rockefeller University
International Fanconi Anemia (IFAR) Registry