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Clinical Trials - Patient Participation

Lymph Science Advocacy Program (LSAP)

What is LSAP?

The Lymph Science Advocacy Program (LSAP) is a program to educate advocates in the science and issues of Lymphedema and related disorders during the bi-annual NLN Conference.. Participants will be selected from submitted nominations and will represent a diversity of backgrounds and interests including primary and secondary LE from related causes. The program will be limited to 5 new participants.

The goal of the Lymph Science Advocacy Program (LSAP) is to engage and motivate patients and caregivers to action in issues of treatment and research of the lymphatic system through education and a more comprehensive understanding of the scientific and clinical research aspects of primary and secondary Lymphedema and related disorders.

Program Highlights:

• Individualized guidance on topic areas
• Introduction to the research process
• Mentors and scientific guidance
• Opportunity to participate in discussion groups with expert lymphologist
• Individualized action plan for dissemination and use of knowledge gained through the pilot program

Who can participate?

Patients affected with LE, caregivers or those whose lives have been affected by lymphedema may apply. Applicants must show a curiosity and interest in learning scientific principles and research methods and be able to function as an observer in scientific session.

LSAP Alumni

• Class of 2002
  
  Mentor: Dr. Pattie O'Brien
  Candace Bridgewater
  Julie Peterson
  Robert Weiss
  Jeanne Tassis
  Jean Deyou
  
• Class of 2004
  
  Candace Bridgewater
  Carol Chastain
  Rebecca Morris
  Thomas Parkinson
  Cathy McPherson
  Robert Weiss
  Joan White
  
• Class of 2006
  
  Martha Domont
  Jennifer Fortener
  Anna Kennedy
  Debbie Miles
  Charles (Pat) O'Connor
  Robert Weiss
  Joan White
  Hiroki Ebisuya
  
• Class of 2008
  
  Kim Avanthay
  Janice Goldberg
  Janet Hasak
  Bonnie Pike
  Kathie Vaughn
  

Conference Reviews

• 2004 NLN Conference LSAP Notes

  The NLN welcomed seven lymphedema patient participants to the Lymph Science Advocacy Program (LSAP) at the 6th NLN International Conference in Sparks/Reno, Nevada in October. The participants included: Candace Bridgewater, Orange Park, FL; Carol Chastain, Folsom, CA; Rebecca Morris, Arlington, MA; Tom Parkinson, DDS, Lakewood, WA; Cathy McPherson, Toronto, ON Canada; Robert Weiss, Northridge, CA; and Joan White, Roswell, GA.

  The aim of LSAP is to engage and motivate patient advocates through a facilitated program focusing on the scientific sessions. The participants completed a rigorous application process and represented a range of interests in lymphatic issues and diverse geographic regions. The program was facilitated by Elda Railey of the Research Advocacy Network (http://www.researchadvocacy.org). Dr. Kathleen Francis served as a physician mentor to the group.

  Beginning with a pre-conference workshop, the participants learned about the medical research system, how therapies are developed and how participants in clinical trials are protected. Dr. Francis presented an outstanding session on the current state of lymphedema research. In preparation for the workshop, the participants studied an online course for improving communication with researchers offered by the Research Advocacy Network, and reviewed articles to better understand evidence-based medicine and the relevance to patient-driven issues. Patients participated in the Plenary sessions attended Instructional session and actively communicated with numerous of the Key Lymphologist from around the world, and clearly there was mutual admiration.

  Through LSAP and in cooperation with the ongoing work of patient advocates nationwide, the NLN is striving to gain a stronger commitment from the lymphedema community to address related issues through basic and clinical research. Program graduates will educate patients, families and caregivers, and possess the knowledge and skills needed to increase understanding of the research process through education on a local and national level to improve patient care.

• 2006 NLN Conference LSAP Review -by Martha Domont
• 2008 NLN Conference LSAP Review

Photos

2002	2006	2008

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