Jan. 31, 2011
CHARLESTON -- The Medical University of South Carolina (MUSC) has added a new box to patient registration forms collected at the time of certain routine health procedures, such as collecting blood and tissue samples. By not checking the box and "opting in," patients may help advance health care research that could result in better treatments and cures for people like themselves and their families. It’s never been easier to help others. If patients check the box, and "opt out" however, they are choosing not to help. MUSC researchers are optimistic that more people would be willing to help when given this choice.
"As we’ve gone out into the community to get feedback on this idea, one pastor summed up this thought with me, ‘If you can help someone, there is no cost, it only takes one time, and it’s confidential, then why wouldn’t you want to help others?’" said Ida Spruill, Ph.D., MUSC College of Nursing assistant professor. "While people may be cautious at first with this idea, the positive feedback has been overwhelming. People understand that by allowing MUSC to use samples for future research that would otherwise be thrown away, they are helping to find better treatments for people in their communities." Spruill is the principal investigator on a research grant seeking the attitudes and perceptions of patients about this new idea.
There are many routine health care procedures needed to maintain people’s health, such as drawing blood or tissue samples. Different groups of people have different needs, and this can be due to genetics or other factors. Unfortunately, physicians and researchers do not always understand the differences or which treatments work best for which people. An important way to study this is to look at samples such as tissue, blood and other bodily fluids, to learn why some people get sick while others do not, or why some drugs work well for some people but not others.
Patients at MUSC can now help researchers as they try to understand these differences and find better treatments by donating unused tissue, blood samples and bodily fluids that would normally be thrown away so that they might be used for future research. To this end, MUSC is creating a bio-sample bank with the goal of it becoming fully operational by March of this year. The MUSC Biomedical Research Bank will store unused blood, tissue and other fluid samples which might be used for later research. When patients consent to donate their samples, those samples are de-identified to protect patient confidentiality, meaning that the samples cannot be traced back to the person who donated them. As a result of this contribution, researchers at a later time can access the bank with appropriate Institutional Review Board (IRB) approval to study the samples to learn more about preventing, finding and treating different diseases and conditions.
When a sample goes into the bank, it is stripped of all identifying information and scanned into the database. When a researcher has an idea for a study, he or she contacts the sample bank administrators and the IRB to request samples. Usually these requests are for very specific samples related to certain diseases, so the more samples in the bank, the better. Those samples are then used as data in a study that hopefully becomes published and leads to better treatments or maybe even cures for certain conditions.
"We are excited about this new way of collecting samples for research because it gets us that much closer to really personalizing medicine," said John Arthur, M.D., Ph.D, professor of medicine, Nephrology Division, and director of the MUSC Biomedical Research Bank. "Right now, there is so much trial and error in medicine and it affects patients’ quality of life. By using these confidential, de-identified samples in research taking place at MUSC, we are in a much better position to learn more, and faster, so that we can positively impact patients’ quality of life in dealing with their condition or disease much sooner."
About MUSC
Founded in 1824 in Charleston, The Medical University of South Carolina is the oldest medical school in the South. Today, MUSC continues the tradition of excellence in education, research, and patient care. MUSC educates and trains more than 3,000 students and residents, and has nearly 11,000 employees, including 1,500 faculty members. As the largest non-federal employer in Charleston, the university and its affiliates have collective annual budgets in excess of $1.7 billion. MUSC operates a 750-bed medical center, which includes a nationally recognized Children's Hospital, the Ashley River Tower (cardiovascular, digestive disease, and surgical oncology), and a leading Institute of Psychiatry. For more information on academic information or clinical services, visit www.musc.edu or www.muschealth.com.
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