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E-Newsletter Spring 2014 Center for Clinical and Translational Science e-Newsletter Center News Rockefeller Leads Largest Survey of Clinical Research Participants: New England Journal of Medicine Report Documents Mostly Positive Experiences By Zach Veilleux Propel Center for Population Health, A multi-center survey of close to data we can use to improve those included responses from participants 5,000 volunteers who enrolled in experiences for every participant.” clinical research studies, the largest at 15 clinical research centers including of its kind, shows that by and large 13 funded by Clinical and Translational The researchers distributed their participants feel valued and respected Science Awards from the NIH. It was 77-question survey — similar to by investigators. But although many published in the New England Journal those used by physicians’ groups gave high marks to the research teams’ of Medicine. (http://www.nejm.org/ and hospitals to incorporate patient trustworthiness and ability to explain doi/full/10.1056/NEJMp1311461) feedback into quality improvement their protocols, the survey also revealed efforts — to a total of 18,890 clinical “We depend on research participants that a sizable minority did not feel trial participants. Overall, 73 percent as our partners to advance science and completely prepared for the study, and of those who returned the surveys rated medicine,” says study author Rhonda that participants wanted researchers to their overall experience very highly Kost, clinical research officer at The inform them of the results of the studies. (marking 9 or 10 on a 10-point scale), Rockefeller University Hospital. “But and 66 percent said they would either their experiences have never been The study, which was led by probably or definitely recommend widely measured in a scientific way. researchers in The Rockefeller research participation to friends or The survey we have developed gives University Hospital’s Center for family. Almost all participants also us, for the first time, a robust method Clinical and Translational Science, and said they did not feel pressure to to begin understanding how effective collaborators at the National Institutes participate. of Health Clinical Center and the our current processes are and provides continued on Page 2 Rockefeller University Hospital and Chinese Clinical Research Nurses Meet for a Day of Collaboration By Rita Devine, Rhonda Kost, and Donna Brassil On October 30, 2013, Rockefeller University Hospital was honored to host five clinical research nurses from China for a day of education in the principles and practice of clinical research as well as the evidence-based practice of clinical research nursing. The group was led by Dr. Xiaokun Liang RN,PhD, project coordinator for Global MD China. The Global MD Organization has jointly initiated special training programs for selected Chinese clinical research nurses since 2009. Rockefeller University medical staff and Clinical Research Nurses from China Dr. Liang was among the first five building on the translational research of Nephrology at Xiyuan Hospital of awarded PhD nurses in China university begun by Dr. Tim Shi. China in Beijing; Ms. Xiuya Xing CRN, trained jointly with the John Hopkins a nurse educator at Beijing Medical University School of Nursing and Dr. Liang was accompanied by Ms. University; and Ms. Qiaoya Wang CRN, Peking Union Medical Center. The Dandan Yang CRN, a clinical research Chief Nurse for the Clinical Research nurses’ visit is one part of a larger coordinator in metabolic disorders at Department at Beijing YouAn Hospital Chinese initiative to build translational Zhejiang University School of Medicine; and Beijing Capital Medical University. research expertise throughout China, Ms Qiu Yu CRN in the Department continued on Page 6 1 Large-scale Survey of Clinical Research Participants Shows Mostly Positive Experiences continued from Page 1 About one-third of participants, engagement with clinical research. What did the researchers learn? however, felt that the “informed consent” process, during which Only 23 percent of participants The survey instrument is a powerful investigators explain the study’s goals, received a summary of the results of tool with which researchers can work risks and procedures, did not completely the study, yet 85 percent indicated to address these and other aspects prepare them for participation, a figure they would have liked to receive one. of the participant experience,” says the researchers say should be improved. Kost. It is now available to researchers “Participants who rated their throughout the U.S. via a public-private The responses to more detailed experience highly were the ones who felt partnership between Rockefeller, questions provided insight most respected, who felt they could trust the NIH, and NRC/Picker, Inc. The into the factors contributing to the research team and who felt valued research was funded, in part, by The positive or negative experiences. as a partner in the research process. Rockefeller University’s Clinical and The survey also identified a gap in They also wanted to be able to make Translational Science Award from communication that could serve as contact with the research team readily the National Institutes of Health. an opportunity to acknowledge the when they had a question or problem. partnership between researchers and A large majority wanted to receive some participants and encourage future feedback about the results of the study. Dr. Shen-Ying Zhang awarded R21 Grant, co-funded by the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institute of Arthritis and Musculoskel- etal and Skin Diseases (NIAMS) By Michelle Romanick complication of primary infection by anti-viral immunity. Preliminary HSV-1, a common virus that usually data using the dermal fibroblasts causes innocuous infections in children. from one patient homozygous for a The pathogenesis of HSE remained DBR1 missense mutation express only unclear until Dr. Zhang and her colleagues very low levels of DBR1 protein and recently showed that the disease may enhanced HSV-1 susceptibility, as result from single-gene mutations in compared to the healthy controls tested. some children that impair Toll-like receptor 3 (TLR3)-dependent, interferon Dr. Zhang and her team will test (IFN)-α/β-mediated immunity to HSV- fibroblasts from all patients carrying 1 in the central nervous system (CNS). mutations in DBR1 or XRN1. They will also use in vitro assays to investigate Both DBR1 and XRN1 have particular the antiviral activity of DBR1 and Shen-Ying Zhang, M.D, Ph.D. CNS expression patterns. Although yeast XRN1, indirectly via TLR3- or IFN- Xrn1 is known as an essential antiviral mediated immunity, or directly via the Dr. Shen-Ying Zhang, Clinical Scholars molecule, it is completely unknown suppression of viral RNA recombination Master’s graduate and a member of how DBR1 and XRN1 can control by DBR1 or XRN1. Anti-HSV-1 immune the Rockefeller Early Phase Physician anti-HSV-1 immunity in the human responses and HSV-1 susceptibility, Scientist was awarded an R21 grant CNS. The research team hypothesized both IFN-dependent or not, in patients’ co-funded by the National Institute of that human DBR1 and XRN1 define fibroblasts and induced pluripotent Allergy and Infectious Diseases (NIAID) a new, CNS-specific mechanismstem cell (iPSC)-derived neurons will be and the National Institute of Arthritis of intrinsic anti-HSV-1 immunity. investigated, in comparison with those and Musculoskeletal and Skin Diseases with impaired TLR3-, IFN-mediated (NIAMS). The title of the project is The goal of the present application is immunity. This research will shed Human DBR1 Defines a New Pathway of to test this hypothesis at the molecular light on a novel molecule and cellular Intrinsic Antiviral Immunity in the CNS. and cellular levels. The proposed work mechanism of HSE pathogenesis, which will be focused on the exploration of will likely open new therapeutic avenues. Childhood herpes simplex virus 1 (HSV- the specific role of DBR1 and its related 1) encephalitis (HSE) is a life-threatening genes (mainly XRN1) in CNS-intrinsic Cite the Grant Please remember to cite the CTSA grant. The following manuscript citation is suggested: “Supported in part by grant # UL1 TR000043 from the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) program.” 2 New Pilot Grants Awarded By Michelle Romanick In October 2013, a total of 42 pilot grants—providing $950,000 in funding—were awarded to investigators to advance their translational research projects. Support for these awards was provided by the Rockefeller University Center for Clinical and Translational Science (CCTS) and the Center for Basic and Translational Research on Disorders of the Digestive System (CDDS), as well as a grant from The Iris and Junming Le Foundation. CCTS Clinical Scholars were awarded 14 of the pilot grants, and Rockefeller Early Phase Physician Scientists (REPPS) were awarded 3 pilots. With the addition of this year’s grants, pilot project funding awarded since the program began in 2006, under the initial CTSA grant, now totals more than $3,250,000. Support from the Center for Clinical and Translational Science Pilot Projects Led by CCTS Clinical Scholars Natalie Burg, MD (Coller): A Proposal to Search for Evidence of Active Platelet-Derived TGF-Β1 and Its Impact on Leukocytes in Systemic Sclerosis. This project will
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