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Joachim Zuther, Lymphedema Specialist. Read more
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One-Stop Searchable Lymphedema Online Database in the Works

In an effort to improving standard care for lymphedema, University of Missouri researchers are working on establishing an electronic database in which relevant, up-to-date and evidence-based research relating to lymphedema and its management can be easily stored, searched and reviewed from anywhere in the world.

This is great news, since currently there is no clear consensus in the medical world of how to diagnose, and when to start treating lymphedema. Individuals searching for information about lymphedema presently have to search dozens of medical websites, or consult a best practices document, which is not up-to-date.

Chi-Ren Shyu

Chi-Ren Shyu, principal investigator for the project and director of the University of Missouri Informatics Institute and his team is cooperating with Jane Armer, professor in the Missouri Sinclair School of Nursing and director of the American Lymphedema Framework Project on creating this new system, which will enable immediate access to data, best practices, literature and research from around the world in a single online database.

The goals of this project are to establish a best-practices document to guide health care professionals in the management of standard care for patients

Professor Jane Armer

affected by lymphedema, and to establish a minimum common dataset for health care professionals and researchers. This dataset will help health care professionals to evaluate and adjust their current practice to manage lymphedema.

Shyu and Armer are creating an automated data mining procedure, which will pull research findings and up-to-date information from scientific journals and websites. In addition, selected health care facilities throughout the country will provide real-time patient data, so clinicians can understand how patients in different parts of the country are affected by lymphedema and its treatments.

This project is funded by a three-year grant awarded by the National Library of Medicine Applied Informatics Program, and will certainly increase awareness of lymphedema as a medical problem for patients in this country and around the world, and improve the therapy for this common condition.

Watch Professor Jane Armer explain the project: http://vimeo.com/9403963
Shyu Article on the topic: http://proceedings.amia.org/120r2s

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6 comments to One-Stop Searchable Lymphedema Online Database in the Works

  • Judy Bukoski

    I am a lymphedema patient and although I can get Medicare to pay for therapy and medical appointments, they still deny payment on lymphedema supplies (ie.support stockings). I find this very disturbing since most lymphedema is a result of cancer treatment for which they do pay for.

    I would like to hear from anyone who is having this same frustration.

    • Linda Thompson

      Judy,
      I have lower extremity lymphedema. I have the same problem with supplies. Medicare and my private insurance paid for the first set of wraps and other needed supplies but nothing after that. I purchase my own for there is nothing else to be done.

  • Carol T. Humble

    I am so happy to read this article about standardizing best practices in the treatment of lymphedema. I have had lymphedema in my legs for over 3 years, and it is extremely hard to find physicians who treat lymphedema, or even have knowledge of the disease and its characteristics. As a patient, I am continually searching for experts in the field of lymphedema treatment only to come up short, leaving me frustrated and disappointed. Bringing this subject to the forefront with an online database would be an enormous help to those of us who need treatment, but are not always aware of where to go to get the medical assistance we need. Lymphedema professionals are few and far between in many areas, and a database of this type would certainly assist those of us who need this information the most. Thank you.

  • Candy Van Frachen

    I would like to see more information on acute lymphedema from cosmetic and orthopedic surgeries. Having research and information on this would be helpful to provide to local doctors that do not understand the condition and treatment for it. Most of my clients that come for treatment do not have MD’s that understand it.

  • Katrina

    This is just so fantastic – I’ve had Lymphodema/Lymphangiomatosis since 1982 and tried researching online at that time. All that was out there was very complicated medical treatise or a lot in foreign languages. Time for this…actually very comforting to know there is information available and it is advancing, thank you!