Lymphedema Research Centers
Lymphedema has accurately been called the "orphan" disease as such little research has historically been undertaken to understand both the pathophysiology of the condition and research that could possible lead to a cure. Despite the fact that funding is still limited compared to other conditions, the pace of research has dramatically quickened in the past few years.
Progress has been made in understand the condition by research into how the lymphatic system ties into other diseases and body systems. The end result thus far has been a tie in that no one would have expected and that the lymphatic system is deeply and intrinsically connected to a profound number of other diseases and plays a major part in a multitude of body processes.
Direct lymphedema research has been focused on understanding how lymphedema might effect the overall health of the patient, how the lymph systems "grows," experimental procedures designed to alleviate the condition, and finally to new genetic treatments that can restore the lymph system to a healthy state.
There is no single "research center." There are however, a few sites, such as the University of Pittsburgh that stand out. The focus there has been primary lymphedema and the genetics of lymphedema. Their Lymphedema Family Study seeks to identify the genes responsible
Overseas, research is strong in the United Kingdom under the direction of Dr. Peter Mortimer; and in Australia under the direction of Professor Neil Piller. In continental Europe, much research in corrective surgical procedures such as microsurgery has been done by Drs. Corradine Campisi and Francesco Bocardo in Italy and research is conducted in Poland by Dr. Waldemar Olszewski. In Lymphedema is slowly beginning to be studied in China, South Korea, however, not much literature has yet been forthcoming.
Listed below are organizations and centers involved in research and a direct link to our page on current clinical trials.
June 11, 2008
Lymphedema Resarch Centers and organizations
Lymphatic Research Foundation Patient Registry
PRIMARY LYMPHEDEMA RESEARCH UPDATE
LYMPHEDEMA FAMILY STUDY
lymphedema and lymphatic development
Government Grants/Research Funds
Examples of some research topics are listed below to illustrate the objectives of this program announcement. It is not required that all or any of these ideas be included; investigators are encouraged to submit applications that are relevant to the goals of this program announcement. 1. Comparative studies of gene expression in lymphedematous and normal tissues, using techniques such as laser capture microdissection and high density microarrays to identify molecular targets.
2. Studies on the phenotypic and genotypic differences of lymphatic vascular cells, compared to arterial and venous vascular cells
3. Elucidation of the process of lymphangiogenesis, including the growth factors, cytokines, and matrix molecules associated with the formation of functional lymphatic vessels. A potential role of trophism to lymph nodes, and the effect of reimplantation of nodal tissue on lymphedema.
4. Development of a biophysical model(s) for interstitial fluid exchange across the lymphatic wall, and the role of the lymphatic matrix in the development of lymphedema. Characterization of the physical and biological mechanisms in the propulsion of lymph within lymphatic vessels.
5. The creation of animal models to confirm the identification of putative genes contributing to lymphedema, and the development of animal models to assess new and complementary or alternative treatments.
6. The development of methods to image and quantitate lymph flow to provide useful endpoints for clinical evaluations.
7. Approaches to explain the asymmetry between more and less affected limbs in an individual with primary lymphedema, when the genetics and environment appear to be uniform. Also, the developmental or hormonal basis for onset that occurs during puberty.
8. Studies on the developmental biology and developmental genetics of the lymphatic system, i.e., the identification and characterization of genes important in the organization and regulation of the development of the lymphatic system.
9. Studies on diseases of skin and subcutaneous tissue that result from chronic lymphedema.
10. New methods to prevent or treat lymphedema or lessen its impact on patients.
11. Development of biobehavioral markers to measure the relationship between health-related quality of life (HRQOL) and lymphedema, including markers to measure the impact of therapeutic interventions.
12. A national patient registry and tissue bank. To foster data sharing in addition to presentations and publications, investigators should consider how to make experimental results available to other scientists for data mining, and how to make archived data interoperable with commercially available software.
RESEARCH INTO THE CAUSES OF LYMPHOEDEMA
For the past 10 years our International Consortium has been working to find the underlying cause of the various types of lymphoedema. Progress was initially slow due to a lack of large families and problems confirming the diagnosis in some cases. Over the past 4 years there have been significant advances in our knowledge, with the finding of 2 genes which cause lymphoedema. In addition our group at St. George's and others around the world have found a number of changes (mutations) within these genes which are believed to be responsible for the development of lymphoedema.
The first gene, responsible for congenital lymphoedema, was discovered in 1998 (Ferrell et al 1998). The gene, called vascular endothelial growth factor receptor 3 (VEGFR3), appears to be responsible for correct development of the lymph system in the fetus.
Alison Evans, PhD student, Cardiological Sciences Department, St. George's Hospital, has now found 4 different mutations in this gene in families with congenital onset lymphoedema.
Lymphoedema-distichiasis syndrome, in which patients with pubertal onset lymphoedema have an extra row of eyelashes which rub on the cornea, is now known to be caused by a gene on chromosome 16 (Fang et al 2000). This gene, called FOXC2, is active during development of the fetus controlling the function of other genes. This controlling effect on other genes probably explains the other findings sometimes associated with this condition such as cleft palate, varicose veins and ptosis. Dr. Rachel Bell, Molecular Genetics Department, St. George's Hospital, has now found mutations in more than 30 different families with this rare condition.
We are continuing our search for a gene for pubertal onset lymphoedema (Meige's disease), the most common form of the condition and are hopeful of a breakthrough in the near future.
Once the gene for a condition is found in a family it offers the opportunity for early diagnosis and the prospect of developing new treatments using our new knowledge of the underlying cause. Tentative steps towards the development of gene therapy for lymphoedema have already been taken (Karkkainen et al 2001).
HOW YOU CAN HELP
We are always eager to include more families in our studies. The more families we are able to include the better our chance of locating the responsible genes. Ideally there should be 2 or more living, affected members in the family but in some cases we will include isolated cases for later mutation screening when the genes are described.
If you wish to take part please contact us:
Department of Cardiological Sciences
Phone 020 8725 5248/2591
Fax 020 8725 2653
Dr. Anne H. Child
Dr. Sahar Mansour
Professor Mansoor Sarfarazi (USA)
Professor Steve Jeffery
Dr. Rachel Bell
Professor Peter Mortimer
Professor Kevin Burnand
Mr. Glen Brice
Mr. Richard Collin
Dr. Anthony Stanton
Dr. Russell Mellor
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Lymphedema People - Support Groups
The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
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Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.
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Page Updated: Dec. 17, 2011