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Featured Stories of Hope
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Weinstein wins palliative award
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6/22/2010
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http://www.regencefoundation.org/award2010.html#_weinstein http://www.deseretnews.com/article/700039363/Huntsman-Cancer-Institute-doctor-wins-palliative-award.html  Sharon Weinstein, M.D. Director, Pain Medicine and Palliative Care Huntsman Cancer Institute Professor, Univ. of Utah Salt Lake City, Utah Sharon M. Weinstein, M.D., is a "pioneer and visionary" in hospice and palliative medicine, according to her nominators. As a faculty scholar of the Open Society Institute's Project on Death in America, she introduced the phrase "integrated palliative care" in 1995 to express the concept of synthesizing holistic supportive care with treatment throughout the course of a disease. In 1998, she established the Pain Medicine and Palliative Care Program at the University of Utah's Huntsman Cancer Institute (HCI), and serves as its director. She also opened an affiliated program at the VA Salt Lake City Health Care System and consults at Primary Children's Medical Center. A natural collaborator, Dr. Weinstein works with other major hospital system in her area to establish quality of care standards, impacting the care of 85 percent of all cancer patients in this region. She is committed to research that improves patient care, and her expertise is chronic pain management. Hers was the first training program in Utah approved by the Accreditation Council for Graduate Medical Education in 2009, enabling HCI to sponsor its first physician fellow in Hospice and Palliative Medicine. In 2009 she was named as a Fellow of the American Academy of Hospice and Palliative Medicine. She designated the award’s $50,000 grant to the Huntsman Cancer Foundation for the Albert A. Weinstein Memorial Palliative Medicine Training Award, in memory of her father.
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New Melanoma treatment nears FDA approval
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6/8/2010
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Reported by: Barbara Smith
SALT LAKE CITY (ABC 4 News) Melanoma is the most deadly form of skin cancer. It can quickly spread to from the outside of the body to destroy vital organs on the inside. But a new drug in late stage clinical trial represents new hope for those who are fighting it.
It’s called Ipilimumab and is a biotechnology drug. Dr. Glen Bowen from Huntsman Cancer Institute says it’s really an antibody. “An antibody is like a protein birr. So, you get a birr stuck in your socks, this is like a little protein birr that sticks to the emergency brake on the inflammatory cells. By sticking to that brake, it releases it and allows the inflammatory cells to fight melanoma.”
Dr. Bowen says typically cancer shuts down the immune system. “Cancers are very tricky they have techniques of suppressing an inflammatory response against them to protect themselves, so this antibody basically stimulates the inflammatory cells to get past that, and actually attack the melanoma cells.”
It is a strategy that has been tried before, but this is the first time it has worked. “This is a very exciting development because we know that the hypothesis is correct; that you can get the patients inflammatory cells to actually kill the cancer cells like paid assassins.”
Ipilimumab was found to improve overall survival of patients with stage four melanoma and twenty percent of those patients lived up to four years longer.
The drug is now in the final phase of testing for FDA approval for treatment of final stage skin cancer, but another test is ongoing at Huntsman Cancer Institute where they are studying the drugs impact on stage three melanoma. “We are actually treating people upstream. We are treating people that have it in their lymph nodes, that don’t have it in their internal organs yet.”
There is hope that testing leads to more uses for the drug which is expected to be fast-tracked by the FDA for approval.
There are side effects to the new treatment. The unleashing of the immune system caused it to attack the pituitary gland and the colon in about ten percent of patients. Most of the side effects were reversible but about 2-percent of study participants died.
For more information on participating in clinical trials of this treatment, contact you physician first to see if you are eligible. Huntsman Cancer Institute is looking for participants in stage three cancer trials.
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The AACR Honors Three Visionary Leaders with Distinguished Public Service Awards
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4/20/2010
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Newswise — The American Association for Cancer Research will honor three visionary leaders for their distinguished public service. John E. Niederhuber, M.D., director of the National Cancer Institute (NCI); Julie M. Fleshman, J.D., M.B.A., president and chief executive officer of the Pancreatic Cancer Action Network; and Jon M. Huntsman, founder of the Huntsman Corporation, were chosen by the AACR’s Board of Directors in recognition of their commitment and dedication to the fight against cancer. “We are so grateful for the contributions of these three extraordinary individuals,” said Margaret Foti, Ph.D., M.D., (h.c.), chief executive officer of the AACR. “They have all given selflessly of their time and efforts to public service and cancer research.” The AACR Distinguished Public Service Award will be presented at the AACR 101st Annual Meeting 2010 during the opening ceremony on Sunday, April 18, from 8:15 a.m. to 9:30 a.m. ET in the Walter E. Washington Convention Center. John E. Niederhuber, M.D., director of the National Cancer Institute (NCI), oversees the National Cancer Program, fostering innovation in all areas of cancer research including the investigation of new ways to integrate our understanding of the genome with clinical care. A nationally renowned surgeon and researcher, Niederhuber has dedicated his career to the treatment and study of cancer. In addition to his leadership at the helm of the NCI, he has supported the advancement of cancer research as a professor, cancer center director, National Cancer Advisory Board chair, external advisor to the NCI, grant reviewer and laboratory investigator. His laboratory at the National Institutes of Health (NIH) is investigating tissue stem cells as the cell-of-origin for cancer as well as the complex relationship between tumor cells and their microenvironment. In addition, Niederhuber holds a clinical appointment on the NIH Clinical Center medical staff. As a surgeon, his emphasis is on gastrointestinal cancer, hepatobiliary (liver, bile duct, and gallbladder) cancer, and breast cancer. He is recognized for his pioneering work in hepatic artery infusion chemotherapy and was the first to demonstrate the feasibility of totally implantable vascular access devices. When Julie M. Fleshman, J.D., M.B.A., president and chief executive officer of the Pancreatic Cancer Action Network, lost her father in 1999 to pancreatic cancer, she made a commitment to changing the course of the disease. Fleshman has since led the Pancreatic Cancer Action Network from a startup nonprofit in 1999 to a national organization fighting pancreatic cancer in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The Pancreatic Cancer Action Network’s advocacy and grassroots efforts have led, in large part, to a 400 percent increase in federal funding for pancreatic research. With an emphasis on expediting scientific and medical breakthroughs that benefit patients, Fleshman has built a cadre of researchers dedicated to the field of pancreatic cancer research and encourages collaboration, information-sharing and innovation. The Pancreatic Cancer Action Network collaborates with the AACR to promote and support outstanding pancreatic cancer research. This year, its funding level is nearly $2.3 million, representing a nearly 90 percent increase from last year. Jon M. Huntsman, founder and executive chairman of Huntsman Corporation, a global manufacturer and marketer of specialty chemicals, is a philanthropist of the highest order. In 2003, Huntsman received the Humanitarian of the Year Award from CNN’s Larry King, and the Chronicle of Philanthropy placed him second on its 2007 list of largest donors. The AACR is honoring Mr. Huntsman for his generous philanthropic accomplishments in advancing the prevention, diagnosis, and treatment of cancer. In 1995, Huntsman and his wife, Karen, founded the Huntsman Cancer Institute at the University of Utah with an initial pledge of $100 million. Since then, he has donated more than $250 million to the institute and donated or raised an additional $800 million. Researchers at this National Cancer Institute-designated cancer center are working to understand cancer from its beginnings and use that knowledge in the creation and improvement of cancer treatments to relieve patient suffering and provide education about cancer risk, prevention and care. To support the work of the cancer center, Huntsman created the Huntsman Cancer Foundation, which is dedicated to funding cancer center initiatives. Download interviews with cancer researchers and recordings of the teleconferences by subscribing to the AACR Scientific Podcasts via iTunes (http://www.aacr.org/itunes) or an RSS Reader (http://www.aacr.org/rss). The mission of the American Association for Cancer Research is to prevent and cure cancer. Founded in 1907, the AACR is the world’s oldest and largest professional organization dedicated to advancing cancer research. The membership includes 31,000 basic, translational and clinical researchers; health care professionals; and cancer survivors and advocates in the United States and more than 90 other countries. The AACR marshals the full spectrum of expertise from the cancer community to accelerate progress in the prevention, diagnosis and treatment of cancer through high-quality scientific and educational programs. It funds innovative, meritorious research grants, research fellowship and career development awards. The AACR Annual Meeting attracts more than 17,000 participants who share the latest discoveries and developments in the field. Special conferences throughout the year present novel data across a wide variety of topics in cancer research, treatment and patient care. The AACR publishes six major peer-reviewed journals: Cancer Research; Clinical Cancer Research; Molecular Cancer Therapeutics; Molecular Cancer Research; Cancer Epidemiology, Biomarkers & Prevention; and Cancer Prevention Research. The AACR also publishes CR, a magazine for cancer survivors and their families, patient advocates, physicians and scientists. CR provides a forum for sharing essential, evidence-based information and perspectives on progress in cancer research, survivorship and advocacy.
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Former Rocket Scientist Applies Research to Healing Breast Cancer Patients
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3/10/2010
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Originally appeared on KSL. UTAH -- What does a rocket motor have to do with breast cancer? Two Utah researchers have found a unique connection that may change the way surgeons remove tumors, not only in breast cancer, but other cancers as well. Dr. Time Doyle, at Utah State University, and Dr. Leigh Neumayer, at the Huntsman Cancer Institute, got the idea while scanning rocket motor fuel. When Doyle left ATK Thiokol about two years ago and joined Utah State University, he came up with a theory. Engineers already use ultrasound to search out tiny, undetected cracks in solid rocket fuel and rocket motors, so could modifying that same technology help surgeons find and pluck out microscopic breast cancer tumors they can't see? "We're actually using ultrasound to determine the tissue structure at the microscopic level, and that's exactly what changes when you have cancer," Doyle explained. Using computerized artificial intelligence, ultrasound waves passing through breast gland ducts could distinguish the actual structural microscopic cancer cells the surgeon can't see but needs to remove. He would know when he's got it all. "It will give them a red light/green light type of indication. That way the surgeon will know when to stop removing tissue," Doyle said. This could happen in real time, while the surgery is underway, eliminating the need to bring the patient back weeks later for a second operation after pathologists have evaluated the tissue. Currently, second or third surgeries are not unusual with patients like Stacey Oliver. "They called me a week later and said they would have to go back in," Oliver recalled. "The tumor board had looked at my case and felt like surgeons needed to get a little bit more of those margins out." But with the ultrasound technique, patients wouldn't need to come back because the tissue would have already been taken out -- and only that which needed to be removed. "Right now, a lot of doctors, in order to get that clear margin, will take out extra tissue. So, the collateral damage for the patient is she loses a large chunk of breast tissue that maybe was never going to cause her a problem," Neumayer said. Within a year, Neumayer will begin testing the ultrasound on specimens removed from patients. If it works, surgeons could begin human clinical trials within three years. Down the road a pen-like device might even be developed that could instantly identify, not only breast cancer, but other microscopic villains as well. ©2010 KSL. All rights reserved. This material may not be published, rewritten, or redistributed.
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Battling Cancer with T-shirts and Laughter
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12/17/2009
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Originally heard on NPR.
Battling Cancer With T-Shirts And Laughter by Howard Berkes Listen to the story here: http://www.npr.org/templates/story/story.php?storyId=121335690
Twenty-nine years ago, Linda Hill sat in a cancer center in California waiting for her first round of chemotherapy. She was 19 and had a softball-sized tumor in her chest and a diagnosis of Hodgkin's lymphoma. Hill's parents were told it was time to have their daughter do things she'd always wanted to do because she seemed to have little time left. "I had it everywhere," recalls Hill, now 48. "I had it in all my lymph glands — head to toe — and so it was quite serious." Hill noticed something about the other cancer patients in the waiting room, most of whom were quite a bit older: "They were all just angry and bitter and sad," she says. "And I thought, 'I don't want to live like that. I don't want my kids to remember me that way.' " Laughing At Cancer With Zingers Three decades, seven kids and three more devastating cancers later, Hill has found a way to keep anger, bitterness and sadness at bay. She laughs at cancer and all it has taken from her, including her thyroid, spleen, colon and breasts. In fact, when we met in the ornate wood-lined lobby of the Huntsman Cancer Institute in Salt Lake City, Hill wore a faded green long-sleeve T-shirt with these embroidered words: "I lost my colon ... but I'm still full of crap!" Howard Berkes/NPR - The inspiration for this T-shirt came from Linda Hill's own confusion after enduring many months of chemotherapy. The aphorism is just one of many cancer zingers that Hill has created for a T-shirt business that focuses on helping cancer patients cope. She chuckles as she browses her T-shirt display just outside the institute's gift shop. "This is our No. 1 seller," she laughs, as she pulls a mustard-colored shirt from the rack that features this message: "Of course they're fake, the real ones tried to kill me!"
The one-liners flow from the single mom, her five daughters and two sons. This is a family of practical jokers looking for laughs in the oddest places. Hill once put bouillon cubes in a shower head so the kids were so the kids were sprayed with chicken broth. And when the family chooses sides for games, there's always one child protesting: "I don't want Mom. She doesn't have a colon!" Battling Thyroid, Breast And Colon Cancer So the Hills couldn't help themselves when mom faced thyroid, breast and colon cancer — all in the past six years. As Linda was wheeled into surgery for a double mastectomy, a petite daughter tenderly whispered to her mom: "Thanks so much for making me NOT the smallest-breasted person" in the family. With five girls, the breast lines snowballed. "You're going to have to date guys who like butts and thighs," the daughters joked. Two daughters, described by Hill as "rather well-endowed," told her, "Guys are going to look you in the eye now, Mom." Hill remembers thinking, "We ought to put these things on shirts, because this is just so funny." Now, 800 T-shirts later, Hill has developed a fledgling market that helps patients laugh through chemo. The shirts are sold for about $25 on Hill's Web site, and at cancer centers across the country. "Everybody has their own way of getting through things," explains Hill. "This just must be my way of doing it." Ongoing Treatment Hill is still being treated for breast cancer. So the jokes just keep on coming. "They took a lump from my breast, so why not my thigh?" another favorite shirt says, prompting another laugh from Hill. "There's not a woman on the planet that doesn't relate to that one," she says. She pulls others from the rack outside the gift shop. "This is a great one," Hill chuckles, reading the line a daughter wrote: "Mastectomy: $12,000. Radiation: $30,000. Chemotherapy: $11,000. Never wearing a bra again: Priceless." Gift shop manager Dianne Rydman watches the reactions of patients. "We have a lot of people in here who don't laugh about a lot," says Rydman. "And they can sit out there and chuckle over that basket of shirts." Some of the shirts have serious themes, including: "Blue eyes run in your family. Cancer runs in mine," or "Cancer took her life. It never touched her spirit." Hill's smile fades as she pauses to consider those words. "Cancer does not define us," Hill asserts. "It's not my colon that makes me love to bake. It's not my breasts that make me crazy and outgoing. And it wasn't my thyroid that gave me my faith in God." But the smile returns as she reminds herself of all those body parts lost to cancer. "At least I've had cancer on parts you can remove," she jokes. "It's a brutal weight loss program." Despite Losses, A Cancer Celebrity Hill's brand of chemo comedy isn't making money. She says she's $7,000 in debt, but still donates $2 from every sale to the Huntsman Cancer Institute. She's not quitting her day job as a fresh produce manager for a food distributor. She's also become a bit of a cancer celebrity at the institute. Multiple primary cancers occur in only about 8 percent of cancer survivors, according to the American Cancer Society. And Hill's pattern of cancers illustrates a phenomenon researchers have documented. At Huntsman, she says, she's so prolific, researchers line up for blood and tissue samples after her procedures and surgeries. "I can make a cancer cell, and I can make it fast!" Hill boasts. And she's survived longer than expected. Hill's voice breaks again and tears flow as she describes the milestones she has managed to reach, despite all those cancers. "I'm going to be a grandma," she says, gulping for breath. "I saw another daughter get married. And I saw another football season of my son. I've got another graduating and going to college." Hill is almost whispering when she says: "And I'd rather they remember me having fun." She adds, "I can have a normal life and just joke about everything. Maybe it's my way of dodging death." Hill quickly composes herself and gets back to the jokes, revealing the zingers to come. "We've got one," she says, chuckling again, "that's going to look like a rearview mirror of a car that says, 'Objects in shirt are smaller than they appear.' " Hill is also hearing from people with cancers yet to make it on her shirts. Ovarian and pancreatic jokes are on the way. But Hill's best line isn't on any shirt. She uses it to describe herself. "I'm so much more than a boob," she says, laughing. "I'm so much more than cancer."
— Does this shirt make my boobs look small?
— I gave them my breasts and all I got was this lousy T-shirt.
— Mastectomy — a surgical procedure to help a woman find a real man.
— I hope my kids inherit their mother's prostate.
Linda Hill's T-shirts are sold at cancer centers across the country and through her Web site.
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The Changing Face of Biobanks
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7/2/2009
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Biobanking is changing rapidly, and it's in no small part due to the demands of systems biology. While small, university-centered banks have existed for decades, large-scale biobanks — whether tissue repositories or population databases — have recently been implemented all across the world. Many are also adding clinical annotation, genetic data, and increasingly genomic, proteomic, and other 'omics information. Population-wide biobanks exist in Iceland, the UK, Sweden, Canada, Estonia, Latvia, Singapore, and Japan. The UK Biobank is one of the most ambitious of these projects, intending to collect, store, and study the genetic information of 500,000 people with the hope of finding correlations between disease and lifestyle, environment, and genes. In the US, the Utah Population Database is the largest of these types of biobanks, housing data from generations of families for more than 8 million people. Because biobanks not only collect and store specimens, but serve as a library of sorts for researchers wishing to work with these samples, they have many requirements. These repositories have always had a number of challenges, such as: ethical concerns, including informed consent; maintaining high-quality samples through good collection and handling techniques; syncing material information with donor clinical information; and maintaining patient privacy in the hands of researchers. Now, as demand from the systems biology community ramps up, biobanking practices are changing to deal with new hurdles. In fact, biobanking is becoming a science in and of itself.
Setting standards A biobank's main job is to collect, store, process, and distribute either biological specimens like tissue, blood, or urine, or clinical data about these specimens, or both. In large-scale biology studies, ideally all samples should come from one biobank. But because genomic and proteomics studies require such vast amounts of samples, they take from many banks — and it's a safe bet that those banks have handled their samples differently. European initiatives are leading the way in what's called harmonization, or making sure that all biobanks follow evidence-based standards for collecting, storing, and handling of specimens. The goal, says Jennifer Harris at the Norwegian Institute of Public Health in Oslo, is to develop a common infrastructure that encourages sharing in order to make high-throughput work possible. "Getting the most out of the data will require a certain amount of sharing and data release," she says. When it boils down to maximizing sample use, one of the biggest challenges is making sure the banks are interoperable. "We really want things to be set up so that across all of these platforms, biobanks can talk with each other and work together," adds Harris, who is also the coordinator for PHOEBE, or Promoting Harmonization of Epidemiological Biobanks in Europe. Other projects working toward building a network of biobanks include P3G, or Public Population Project in Genomics, and BBMRI, or Biobanking and Biomolecular Resources Research Infrastructure. BBMRI is focused on the design and management of biobanks, standard protocols for sample handing, cataloguing and comparing information, and coordinated bioinformatics. When he first started his lab several years ago, Philip Bernard says that the biggest concern was getting fresh tissue to run microarrays for breast cancer biomarkers. Bernard, who is the medical director of the Solid Tumor Molecular Diagnostics Laboratory at ARUP and an investigator at the Huntsman Cancer Institute of the University of Utah, started the fresh tissue biobank at Huntsman Hospital mainly because so little fresh tissue was available. In 2008, the project consented 3,500 cancer patients. "Five years ago, I realized how important it was … to have good quality specimen that we could get intact RNA from so we could do microarray [studies]," Bernard says. He adds that today, one of the biggest challenges is making sure that the quality of the tissue is what's expected based on what the investigator wants to use it for. To that end, he "set up standard operating procedures on how tissues are supposed to be collected, and what types of tubes they're supposed to be procured in," he says. "But in the end, even if you follow the protocol and you think that you've done everything right, there [are] still variables that you don't know for sure until you actually analyze the tissue to see if it's of the right quality." Elisa Eiseman, a senior scientist with the RAND Corporation and advisor to the National Biospecimen Network Design Team, was contracted by NCI to draft the first report in the US analyzing what's needed for a high-quality biobank network. She conducted case studies of 12 existing human tissue banks to identify best practices for optimizing genomics- and proteomics-based research. Taking into account everything from sample collection and processing to bioinformatics and privacy, ethical, and consent issues, the largest concern turned out to be standardization, Eiseman says. "The biggest problem is the way one biobank does its collection, processing, and storage may not be the same as another biobank. And when researchers use tissue or samples from those two different biobanks, the results may not match because they weren't collected, processed, and stored in the same way," she says. "I think what everyone's trying to do is to set out some guidelines and rules for biobanks to follow so that there is some kind of standardization across biobanks." For large-scale studies, increased standards means decreased variability. When it comes to determining whether variability seen in an assay is due to actual sample variability or variability from different biobanks, standard protocols are key. In another study that Eiseman is working on for NCI's Office of Biorepositories and Biospecimen Research, she's looking at what she calls "pre-analytical variables," or variables that might be introduced anytime between when the sample is taken to when it ends up in the researcher's hands. "If you're trying to determine changes that might be due to a cell becoming cancerous but you're seeing all these changes, how do you know whether it's because the cell is a cancer cell or because it was sitting on the bench top for too long?" Eiseman says. "Standardization is going to go a long way." Biomatrica CSO Rolf Müller thinks that the sample volume needs of high-throughput studies are going to force biobanking to become "green" in order to be sustainable. His company has developed a technology for long-term dry storage based on extremophile biology, which ultimately could replace the costly and energy-consuming freezer or nitrogen-storage techniques that are needed today for reproducible and reliable experimental results. "It is a very big energy and carbon footprint, and it's also very, very expensive," Müller says of current biobanking storage techniques. "In the systems biology environment, we look at thousands of genes, thousands of proteins. In order to make good analysis, you need samples that are not partially degraded … so sample stability is key." So far his company has applied the techniques to DNA and RNA, and is working on applying it to proteins.
Biofx to the max Going hand in hand with sample collection, storage, and handling come the bioinformatics challenges of not only associating phenotype and study data with samples, but also making the bank's information accessible to clinicians and researchers. Now that sample sizes have gotten so large and banks continue to house more and more data, including genotypic, proteomic, clinical, and demographic information, most experts agree that bioinformatics infrastructure and expertise are pressing concerns. "It's absolutely essential, and it's key," says Harris. PHOEBE's Databases and Biobank Information Management Systems platform is being put to good use — how samples are traced and how the metadata are integrated into the biobank information management systems is especially important. LIMS have gone to BIMS, or "biological information management systems, [which] are much more extensive in terms of the kinds of information that are in those systems," Harris says, noting that these have put a higher demand on researchers in terms of knowing how to use them. Linking clinical information to these samples is also becoming a daunting task, considering the amount of available information from large population databases and the huge sample sizes. Getting consent from patients, which lets researchers link clinical information to samples, requires a biospecimen tracking database that's both manageable and searchable, Bernard says. The backlog has been in entering data from pathology reports, which are usually written by hand. "Getting the information into the database in a way that it's searchable has been a real challenge, and I think most of the institutions around the country have struggled," Bernard says. "[Bioinformatics] is huge and it continues to be needed."
Ethics for all Ethical concerns surrounding patient privacy have always been important. While traditional biobanks have similar issues, growing them for large-scale studies presents new challenges around informed consent, maintaining patient privacy and confidentiality, and the sharing of research or clinical benefits. One of the first steps to obtaining patient samples is getting informed consent, which traditionally means patients agreeing with how their samples may be used. As banks grow in size and samples are used for increasing numbers of studies, the concept of consent is changing. Genome-wide association studies will soon be followed by proteomic, transcriptomic, and metabolomic assays as researchers try to make the most of samples. According to Harris, "This kind of traditional idea of informed consent is difficult to fulfill if your definition of 'informed' is that people know how their samples are going to be used because sometimes you don't know how they're going to be used." The idea of broad consent doesn't always pass with all IRBs and ethics review boards, she adds. Additionally, with more and more samples being used in large GWAS and other studies, patient privacy is a big concern for many donors. "Consent [from] patients allows us to link information from their [sample] material to clinical information," Bernard says, so there has to be some method to de-identify samples for research purposes. Elisa Eiseman says that informed consent has always been an issue and while it's important especially for bigger banks, where they're collecting so many samples, a larger issue is standardizing collection, storage, and de-identification processes to make sure patient information isn't somehow leaked between biobank and researcher. "What people worry about when you start talking about genomic studies is that once you have enough information from a single person, can you easily identify that person?" Eiseman says. "The whole idea of privacy, confidentiality — people worry about that more." Virtual Biobanking: The Serious Adverse Events Consortium
While large repositories continue to hoard increasing numbers of samples, not everyone is jumping on that bandwagon. The future of biobanking, according to Arthur Holden of the Serious Adverse Events Consortium, is targeted collection — not housing thousands of samples that may never be used, but going out and finding specimens for specific studies. As the founder of the SAEC, which was set up in 2007, he's amassed a large network of different academic institutions and pharmas that provide hard-to-access samples for genotyping studies. They've focused on two serious adverse events so far — drug-induced liver injury and serious rash — and they collaborate with Expression Analysis to run the genome-wide association study. Their goal is to identify and validate genetic variants that may be predictive of drug-associated serious adverse events, says Holden, or "something that is severely debilitating, if not lethal, and typically requires the immediate cessation of the drug." Because it's not easy to collect samples from such rare cases, Holden says it made sense to set up the SAEC as a network, rather than spend years trying to acquire the necessary number of samples on their own. He works out of his office in Chicago, while the partner institutions span the globe, and the genotyping facility is in Durham, NC. "The reason it came about is that no one organization — no pharmaceutical company, the government, no single health provider — has the scale because of the rarity of these events to aggregate the necessary cohorts both in terms of ethnic variation associated with the phenotype or the differences across and within drugs that may be associated with the phenotype," Holden says. The samples for phase I of the drug-induced liver injury study, which now has almost 500 patients, came from leading academic institutions across Europe; for serious skin rash, the major contributor was GlaxoSmithKline. Building a collaborative bank underlies the reality that biobanking for 'omics studies is becoming more of a team sport. "Instead of saying, 'We're just going to bank a whole bunch of people and figure out what science we're going to do off of that,' we said, 'No, we want to do some science and so we're going to build a network to yield the bank to enable us to do that science.'" Holden sees future steps toward Web-based consent and enrollment, as well as expanding the use of cases generated in pharma clinical trials.
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TEAM TUMOR - RUNNING FOR A CURE
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6/9/2009
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Running for a cureBy Matt Gerrish Special To The Tribune Originally appeared in the Salt Lake Tribune. Updated: 06/08/2009 04:21:48 PM MDT
Last year, cancer survivor Dov Siporin pulled off one of the toughest tasks of his life. Despite undergoing surgery to remove more than a foot of his colon only six weeks earlier, Siporin participated in the grueling Wasatch Back Relay, a 170-mile running event from Logan to Park City. Not even the advice of his doctor halted his goal of running in the race. "I ran the relay and began a three-month round of chemo right after," Siporin said. "After another surgery I did three more months. At the beginning of April, they found another tumor in my liver." Despite a new tumor found this year, Siporin still hopes to duplicate last year's success in this year's relay from June 19-20. This time around, he is bringing along some help. "I put together a team of as many current chemo patients as I can," Siporin said. "A bunch of us are survivors and three people that are running are undergoing chemo as well." "Team Tumor" was created in February to encourage those with cancer and those surviving cancer to get out and focus on goals other than those dictated by the disease. The team has 14 members, including survivors, supporters and people currently undergoing treatment. "Without a doubt it's a real inspiration," Siporin said. "I try to get myself in the right mental state for if the worst happens, but running with others who have been and are still going through what I am is awesome." Sherri Nielson, a breast cancer patient, never ran competitively until Siporin approached her about the relay, where team members take a few legs of the 170-mile run, a few months ago. "I work with Dov, and he asked me in March if I wanted to run with the team," Nielson said. "I'm quite nervous about it, because some people are running a lot in their legs, but it's been very positive. It's given me a goal and it's made me healthier too." "It's great to see others rise up and do things they thought they couldn't do," Siporin said. "Sherri has been pushing it hard, and I am excited to see her and all the other faces when they are at the finish line together." Not only are members of Team Tumor running for themselves, they are running for the lives of future cancer patients. With the help of the Huntsman Cancer Foundation, Team Tumor is also heading a fundraiser to help fight cancer in all its forms. "It's a wonderful idea," Nielson said. "The Huntsman Foundation has been so wonderful to many of us and I'm thankful that I can be apart of it." For more information on donating funds to the cause, visit www.huntsmancancerfoundation.org.
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