We are grateful to the Portland area and national Hyundai dealers who so graciously fuel the Hyundai Hope on Wheels program to fund childhood cancer research across the nation. Our laboratory yesterday received a generous award of $100,000 to study the response of alveolar rhabdomyosarcoma to growth factor inhibitors... and to determine the mechanisms by which such strategies might be improved to prevent relapse and inhibitor resistance. We are all also very humbled by rhabdomyosarcoma patient, Josh Flanery, who took his time to talk with the group about his own experience with adolescent and young adult cancer.
We are thankful to be one of a handful of recipients of an R01 supplement exceeding $200k in response to the Carolyn Price Walker Act. This award to our laboratory and the Northwest Sarcoma Foundation is meant to increase awareness of the improved outcomes of childhood cancer patients when treated at specialized, multi-disciplinary centers. We also have a project to increase awareness of the value of biopsy samples for scientific research when tumors grow despite treatment. Many thanks to the great number of people on the team at Doernbecher Children's Hospital, Melissa Hill at the Northwest Sarcoma Foundation, and Nancy Goodman of Kids vs Cancer for making this possible.
This past week was the Children's Oncology Group Fall meeting. Normally, the COG meets twice a year to discuss design and results (when available) of the latest clinical trials. This was a particularly special meeting, in that founding COG Chair, Dr. Gregory Reaman, was recognized for his phenomenal legacy of work with COG & CureSearch, and physician-scientist Dr. Peter Adamson took the leadership position moving forward. This meeting was well attended by pediatric oncology medical caregivers and the public alike. Our lab's contributions were a rhabdomyosarcoma presentation to the Soft Tissue Sarcoma Biology Special Session, as well as chairing (with the help of Maryam Fouladi) the CNS new therapeutics session. [ above right: Charles and Ross Vick, advisory director member of QuadW, discussing sarcoma research ]
Groups like CureSearch, foundations and individuals approach childhood cancer advocacy through hard work in lobbying for executive and legislative initiative that improve the research and care of childhood cancer patients. One example is that September is "Childhood Cancer Awareness Month" by Presidential Proclamation. Nancy Goodman is a childhood cancer parent and founder of KidsvCancer.org who regularly lobbies on behalf of childhood cancer causes. Another advocacy group for increasing drug availability for cancer patients is the Abigail Alliance. These groups certainly deserve our thanks and support in their efforts. [ 9/15/10 For a touching story about a little girl named Joanna whose memory is bringing awareness and rallying a community around childhood cancer patients, click here. ] [ 9/16/10 See Nancy Goodman's testimony before the House at http://www.kidsvcancer.org/pediatric-cancer-caucus/]
We'd like to acknowledge nurse Rae Acosta who is coordinator for the Pediatric Oncology Phase I program at Doernbecher Children's Hospital, with whom we team to design preclinical trials that address special populations of pediatric cancer patients most in need of drug development. Dr. Suman Malempati is overall leader of this COG-affiliated Phase I program, and it is the cross talk that we develop with Rae and Suman that makes what we do in the research lab seem all the more tangible. [ above right: Jen (left) and Rae (right) next to some new equipment in the lab ]
We are grateful to the basic scientist and clinical researchers at the University of Washington, Seattle Cancer Care Alliance and the Fred Hutchinson Cancer Research Center for meeting with our OSHU team (Suman Malempati, Chris Ryan and I) to discuss areas of synergy between our research programs. We found strong common interests, particularly in the areas of (1) understanding how medulloblastomas grow and spread, (2) defining the basic biology of the differentiation defect for rhabdomyosarcoma and (3) translating recent studies of adolescent and adult sarcoma biology to clinical trials. The opportunity to explore immunotherapy for sarcomas is especially strong, too. We are thankful to the laboratories of Dr. Jim Olson, Dr. Stephen Tapscott, Dr. Michael Jensen and the clinical trials researchers Doug Hawkins, Robin Jones, Eve Rodler - and especially surgeon-scientist Chappie Conrad, for taking the time to explore and initiate these dual city collaborations in the Pacific Northwest. Charles
A question sometimes asked is how research can be advanced, and contributing tissue to a tumor bank for research is a key element (money, yes, is nice... but high quality tissue from patients with tumors for which little is know is more valuable). And if it can be put in a gentle way, tumor tissue from the patients that researchers and clinicians so far have failed is the most valuable. That is, tissue from patients with relapses... even post-mortem biopsies from patients that have failed our best treatments.
How does one enroll to give tissue? In the case of soft tissue sarcomas, the Children's Oncology Group (COG) has had a tumor bank protocol called "D9902" open since March 1999. The consent form for this study is usually presented to families at the time a child is diagnosed and is being considered for a COG treatment study. Most people think of D9902 as a study for collecting tissue from the original untreated tumor, but... the protocol does already allow tissue to be collected from biopsies done at the time of relapse, as well as tissue taken after death (autopsies, partial autopsies and post-mortem biopsies). In practice, relapse samples rarely are collected (there are practical reasons not to subject children to extra procedures). Post-mortem samples are scarce... maybe none, with recent notable exceptions.
Where does the tissue go? well, a really good tumor bank! The COG contracts the Pediatric Cooperative Human Tissue Network (pCHTN) to store COG sample studies. Their Director is Dr. Nilsa C. Ramirez, and she and the Biopathology Center for the pCHTN are at the Nationwide Children's Hospital in Columbus, Ohio. Nilsa succeeds the late Dr. Stephen Qualman, who himself was taken by pancreatic cancer. Dr. Qualman was a leader in rhabdomyosarcoma pathology research, but Nilsa keeps this tradition in sarcomas strong, and she was recently joined by rhabdomyosarcoma researcher Dr. Peter Houghton who is building an exciting pediatric cancer research program at Nationwide.
What happens with the tissue? It gets used, hopefully! Dr. Stephen Skapek at the University of Chicago leads the Soft Tissue Sarcoma Biology subcommittee of the COG. Researchers send the pCHTN/COG applications to use the tissue. The applications are reviewed by Steve and others on his committee (such as myself). If the study looks promising, a few samples are sent. If the researcher shows promising results, many more samples can be sent. In fact, for the best studies we even consider, "emptying the bank". (important notes: the researchers only have de-identified samples... they won't know each patient's name. Also, statistical rigorousness is another important judging criteria for proposed studies).
How much does it cost? In theory, it shouldn't.... the tissue collection kits are meant to be a part of the existing COG D9902 protocol. However, there have been cutbacks in what the NIH/NCI gives COG for its studies. If there were a sudden 'flood' of samples, the pCHTN and I estimate it would cost $150 total (70 for the kit, 30 to ship the kit to the child's hospital, 50 to ship it back on dry ice). I've talked with a few foundations on whether they'd sponsor kits, and while we don't have any definite commitments, I think if the need arose we could find a way that patients wouldn't need to use their own money to contribute to research through the tumor bank.
I hope this helps with some of the questions arising lately. Feel free to comment on this blog or email me for more information.