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Lympatic Research Foundation Patient Registry

Patient Registration

The Lymphatic Research Foundation , or LRF, would like to keep in touch with patients. In addition, they are collecting patient data to promote epidemiological studies, patient participation in clinical trials, tissue/vessle/organ bank for research, and genetic studies. Information shared with researchers will be provided on an anonymous basis and you will not be directly contacted by any researcher. You may withdraw, in writing, at any time.

They will not release this information to medical providers, suppliers, mailing lists services, or the like. Thank you.

Go to: http://www.lymphaticresearch.org/FORMS/registry.html

 		 

MEDICAL REFERENCES

  1. Lerner R. Complete decongestive physiotherapy and the Lerner Lymphedema Services Academy of Lymphatic Studies (the Lerner School). Cancer. 1998;83(12 Suppl American):2861-2863.
  2. Casley-Smith JR, Boris M, Weindorf S, Lasinski B. Treatment for lymphedema of the arm--the Casley-Smith method: A noninvasive method produces continued reduction. Cancer. 1998;83(12 Suppl American):2843-2860.
  3. Brennan MJ, Miller LT. Overview of treatment options and review of the current role and use of compression garments, intermittent pumps, and exercise in the management of lymphedema. Cancer. 1998;83(12 Suppl American):2821-2827.
  4. Szuba A, Rockson SG. Lymphedema: Classification, diagnosis and therapy. Vasc Med. 1998;3(2):145-156.
  5. Rinehart-Ayres, ME. Conservative approaches to lymphedema treatment. Cancer. 1998;83(12 Suppl American):2828-2832.
  6. Megens A, Harris SR. Physical therapist management of lymphedema following treatment for breast cancer: A critical review of its effectiveness. Phys Ther. 1998;78(12):1302-1311.
  7. Meek AG. Breast radiotherapy and lymphedema. Cancer. 1998;83(12 Suppl American):2788-2797.
  8. Tunkel RS, Lachmann E. Lymphedema of the limb. An overview of treatment options. Postgrad Med. 1998;104(4):131-134, 137-138, 141 passim.
  9. Daane S, Poltoratszy P, Rockwell WB. Postmastectomy lymphedema management: evolution of the complex decongestive therapy technique. Ann Plast Surg. 1998;40(2):128-134.
  10. Rockson SG, Miller LT, Senie R, et al. American Cancer Society Lymphedema Workshop. Workgroup III: Diagnosis and management of lymphedema. Cancer. 1998;83(12 Suppl American):2882-2885.
  11. Ko DS, Lerner R, Klose G, Cosimi AB. Effective treatment of lymphedema of the extremities. Arch Surg. 1998;133(4):452-458.
  12. No authors listed. The diagnosis and treatment of peripheral lymphedema. Lymphology. Consensus Document of the International Society of Lymphology Executive Committee. 1995;28:113-117.
  13. Boris M, Weindrof S, Lasinski B. Lymphedema reduction by noninvasive complex lymphedema therapy. Oncology. 1994;8:95-106.
  14. Casley-Smith JR, Casley-Smith JR. Modern treatment of lymphoedema. I. Complete physical therapy: The first 200 Australian limbs. Australas J Dermatol. 1992;33(2):61-68.
  15. Pappas CJ, O'Donnell TF. Long-term results of compression treatment for lymphedema. J Vasc Surg. 1992;16:555-564.
  16. Gloviczki P. Principles of surgical treatment of chronic lymphedema. Int Angiol. 1999;18(1):42-46.
  17. Petrek JA, Pressman PI, Smith RA. Lymphedema: Current issues in research and management. CA Cancer J Clin. 2000;50(5):292-311.
  18. Szuba A, Cooke JP, Yousuf S, Rockson SG. Decongestive lymphatic therapy for patients with cancer-related or primary lymphedema. Am J Med. 2000;109(4):296-300.
  19. Andersen L, Hojris I, Erlandsen M, Andersen J. Treatment of breast-cancer-related lymphedema with or without manual lymphatic drainage--a randomized study. Acta Oncol. 2000;39(3):399-405.
  20. Women's Health and Cancer Rights Act of 1998. Pub. L. No. 105-277. October 21, 1998. http://www.hcfa.gov/medicaid/hipaa/content/whcra.pdf (accessed August 6, 2001).
  21. ArmAssist Non-Elastic Adjustable Limb Containment System [website]. Tampa, FL: Trinity Lymphedema Centers; 2002. http://www.trinitylc.com/cmpgarm1.html (accessed April 26, 2002).
  22. TriCenturion, LLC. Pneumatic compression devices (used for lymphedema). Policy No. LYPH20021201. Medicare Local Medical Review Policy. DMERC Region A. Columbia, SC: TriCenturion; April 1, 2002.

Pain & Post-Masectomy Breast Cancer Patients
http://www.lymphovenous-canada.ca/paincan.htm

Lymphatic Research Foundation The Lymphatic Research Foundation (LRF), a 501(c)(3) not-for-profit, taxexempt organization, was founded in July 1998 to support and promote biomedical research to find improved treatments and cures for lymphatic disease, lymphedema and related disorders.  LRF’s program goals include:  fostering related medical and scientific disciplines to participate in lymphatic research; increasing public and private funding and support for lymphatic research by government, industry, foundations and individuals; fostering collaboration and the exchange of information and resources within the scientific and medical community; providing research grants and awards; and promoting a national tissue bank and patient registry.

Accomplishments
Launched, with the generous support of Mary Ann Liebert Inc., Publishers, an international, peer-reviewed journal, Lymphatic Research and Biology 
Sponsored two international “think tank” conferences, co-sponsored with and held at the National Institutes of Health (NIH).  Proceedings published in the Annals of the New York Academy of Sciences
Successfully advocated for congressional and federal agency support for lymphatic research
Instrumental in the NIH’s issuance of a Program Announcement calling for grant applications on the Pathogenesis and Treatment of Lymphedema
Developed Outreach Programs to target Pharmaceutical and Biotechnology industries
Formulated a Coalition for the Advancement of Lymphatic Research to expand the frontiers for lymphatic disease
Established a Lymphatic Research Grants and Awards Program
Produced an award-winning video, Mobilizing Efforts for Hope, Research and Cure, donated by Todd Street Productions (Telly Award); publish educational materials, including a newsletter, Lymphatic Research Matters; and host a website, www.lymphaticresearch.org
Enlisted the support of ABC News correspondent Sam Donaldson, a lymphedema patient, and raised in excess of ,000 (contributions/in kind donations) to promote and support research programs

Selected as a Public Interest Organization to work with the National Heart Lung and Blood Institute to ensure that the needs and interests of the public are represented; selected as 2002 Featured Public Interest Organization.