Lymphedema Research

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SusanRachel
SusanRachel Member Posts: 68
edited July 2016 in Lymphedema

Looking for people willing to participate in lymphedema research.

Here's the back story: I am a physician who was diagnosed with breast cancer 21 months ago and lymphedema just over a year ago. Without a doubt, the lymphedema is worse than cancer. I was stunned to discover how little research has been done into the condition and even more stunned to be told that the "gold standard" for lymphedema care is nightly wrapping, daily compression garments, and daily massage FOREVER. Judging from other entries in this thread, I am not the only one who feels that way.

My reaction is that I am in the process of setting up a lymphedema research program at my hospital. Here is where you come in: answer yes in this thread if you 1) have lymphedema and 2) would be willing to answer surveys, get measurements, try exercise programs, etc. If you know others who would be interested, please add how many people in your answer. I anticipate this will be ongoing with multiple study protocols, but you can opt in or out of any of them. Right now, I need a rough idea of how many participants I might have so I can develop a study design that would have sufficient power to be statistically significant.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2016

    Whoa, Doc! I sure share your frustration with this whole lymphedema thing, but before you start soliciting private information from patients via this site, shouldn't you be identifying yourself, your institution, and the focus of your study? We know nothing about you or your intentions beyond what you've posted in three brief posts--in fact, your cavalier approach to this solicitation sure doesn't engender trust in your qualifications to conduct a rigorous study on any aspect of lymphedema.

    Have you investigated the extent of the lymphedema research already undertaken, and that in process now? Are you in touch with other researchers? Signed up for the NLN professional conference in the fall? In contact with the American Lymphedema Framework Project? If you're legit, let's slow down here and approach this in a professional manner that is likely to result in real benefit to those of us who struggle with this confounded condition.

    Thanks for rethinking this,
    Binney

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    There is an information post for researchers here:

    https://community.breastcancer.org/forum/131/topics/824250

    BarredOwl

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  • SusanRachel
    SusanRachel Member Posts: 68
    edited July 2016

    Wow, I was not expecting that response. I apologize.

    I am not asking for private information; just a yes or no. This pre-study phase is necessary in order to ensure I do not begin a protocol that would require 100 subjects when only 10 are willing to participate.

    I have been spending every non-work moment getting up to speed on the current state of the research, mapping out gaps, and determining which of those I have the resources to address. I have completed clinical investigation training, talked with the IRB, and done a literature review. I have two collaborators, one of whom has published lymphedema research. I do intend to attend the NLN conference, subject to work demands. I am not approaching this in a cavalier manner at all. I am sorry you read it that way.

    Peace.

    SR

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Hi DocSR, and welcome to Breastcancer.org!

    We understand this is a pre-study, but please, be aware of our community rules. As you can read in the link that BarredOwl gave you, researchers looking for study participants must obtain the advanced written consent of Breastcancer.org prior to communicating any request for participation in research studies, school projects, polls or organizational events. Please review our Community Rules. If you want to continue with this research and post in the Discussion Boards looking for participants, please provide the required information to Moderators via private message or email at community@breastcancer.org.

    Thank you for understanding and helping us maintain this as a safe and supportive community!The Mods


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