Sickle Cell News | March 2016

Sickle Cell News for March 2016   Launch of the New SCInfo.org Website The Sickle Cell Information Center website, www.scinfo.org began in 1997, shortly after internet communication took off. Founded by James R. Eckman, MD, Professor of Hematology and Medical Oncology at the Winship Cancer Institute and Professor of Medicine and Adjunct Professor of Pediatrics in Medical Genetics at Emory University School of Medicine, and Allan Platt, PA-C, MMSc, DFAAPA, Academic Coordinator and Director of Admissions for the Emory University Physician Assistant Program,http://www.scinfo.org has been the leading web-based resource for information about sickle cell disease for the past twenty years. The website is widely used, both throughout the United States and around the globe, regularly averaging 13,500 hits per month, and over 150,000 per year. When Dr. Eckman retired in 2013, after three remarkable decades of work developing the Comprehensive Sickle Cell Program at Grady Health and caring for thousands of patients in the Atlanta area, Allan Platt continued to maintain www.scinfo.org. Now, we are pleased to announce that the site has been completely reorganized with a new format, fresh images, and revised text. A collaborative interdisciplinary team of scholars drawn from the Emory Center for Digital Scholarship, the Rollins School of Public Health, and the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta (CHOA) completed this work. Both Dr. Eckman and Allan Platt have been involved in the re-design and we have taken care to leave many familiar aspects of the original website in place so that patients, families, educators, employers, and healthcare providers can access what they need with ease. Generous support for revising the website came from the University Research Committee (URC) of Emory University, from the Emory Center for Digital Scholarship (ECDS) Andrew W. Mellon Foundation Award, and from the Aflac Cancer and Blood Disorders Center. We are grateful for the opportunity made possible by this funding and proud to build on the excellent work started by Eckman and Platt so many years ago. As always, www.scinfo.org is committed to providing sickle cell patients and their families and health care providers with professional education, news, research updates and access to up-to-date sickle cell resources worldwide. New features of the site include daily postings of new PubMed articles, links to recent articles from news outlets across the web, additional multilingual resources for patients, families and health care providers, listings of state, national and international sickle cell organizations, and an expanding list of global resources on sickle cell disease. Clinical guidelines are being up updated and will soon be available.  The site maintains the privacy of all individuals and no information is gathered. The site is not supported by and does not accept advertising requests. Content and responses are reviewed by the Center Advisory Board. And finally, Information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician. In addition to thanking the institutions that supported this effort, it is important to recognize the work of Mary E. Frederickson, PhD, Clinton H. Joiner, MD, PhD, Peter A. Lane, MD, James R. Eckman, MD, Allan Platt, Allen Tullos, PhD, Wayne H. Morse, Jr., Erin Hecht, PhD, Mekdes Tsegas, Lauren McNaughton, Chase Lovellette, Adrya Stembridge. We also thank the following individuals and institutions for giving us permission to use images and materials from their collections:  Oregon State University, Hertz Nazaire, Ellen Weinstein, and the Estate of Twins Seven Seven (Prince Taiwo Olaniyi Oyewale-Toyeje Oyelale Osuntoki). We hope you enjoy the changes that have been made and the continuity that the site provides. We welcome comments and suggestions for more revisions, so let us know what you think. http://SCInfo.org News from the website news feed   Multiple myeloma drug could revolutionize treatment for sickle cell ...   Cure for sickle cell in adults validated -- ScienceDaily   Sickle Cell Anemia News -- ScienceDaily   Sickle Cell Disease - 5 Things to Know - NYTimes.com   Pediatric sickle cell study stopped early due to positive results ... Our healthcare system abandons adult sickle cell patientshttps://www.washingtonpost.com/national/health-science/unbearable-pain-not-enough-doctors-just-another-day-as-an-adult-with-sickle-cell/2016/03/21/f6598a5c-e655-11e5-a6f3-21ccdbc5f74e_story.html   New Resources Sickle What? Written by Lisa Rose Price $17.95 - Sickle What? arms patients and parents of newly diagnosed children with the knowledge they need to understand and manage sickle cell disease (SCD). Learn about SCD and how a person gets it in easy-to-understand terms to help parents better understand and be able to explain SCD to a child. Sickle What? shows readers how to read and understand a lab report,  what action steps to take when pain occurs and the importance of asking questions and communicating openly with doctors. To order please contact Daniel at dderousseau@hiltonpub.com, or 219-922-4868.   Sickle Cell Journal Price $15.00 -Our Sickle Cell Journal is vital for any sickle cell patient. It allows the patient to journal about their experiences with Sickle Cell, allows the patient to journal about their medications and the different side effects. This is a vital tool for any physician or hospital since they will be able to see the history of the patient’s experience with the disease.  To order please contact Daniel at dderousseau@hiltonpub.com, or 219-922-4868.