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Lymphedema Research Centers

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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.

Pat O'Connor

June 11, 2008

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Lymphedema Clinical Trials

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Lymphedema Resarch Centers and organizations

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Lymphatic Research Foundation

http://www.lymphaticresearch.org/

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Lymphatic Research Foundation Patient Registry

http://www.lymphaticresearch.org/main.php?menu=patients&content=patient-reg

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PRIMARY LYMPHEDEMA RESEARCH UPDATE

University of Pittsburg

http://www.pitt.edu/AFShome/g/e/genetics/public/html/lymph/update.htm

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LYMPHEDEMA FAMILY STUDY

University of Pittsburgh

http://www.pitt.edu/AFShome/g/e/genetics/public/html/lymph/noframes.htm

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Hereditary lymphedema and lymphatic development

http://www.umich.edu/~twglab/LD.htm

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Government Grants/Research Funds

http://grants1.nih.gov/grants/guide/pa-files/PA-04-071.html

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.

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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:

St George's Hospital
Department of Cardiological Sciences
Cranmer Terrace
London
SW17 0RE

Phone    020 8725 5248/2591
Fax        020 8725 2653
e-mail     g.brice@sghms.ac.uk

CONSORTIUM MEMBERS

Dr. Anne H. Child

Clinical Geneticist

Dr. Sahar Mansour

Clinical Geneticist

Professor Mansoor Sarfarazi (USA)

Molecular Geneticist

Professor Steve Jeffery

Molecular Geneticist

Dr. Rachel Bell

Molecular Geneticist

Professor Peter Mortimer

Dermatologist

Professor Kevin Burnand

Vascular Surgeon

Mr. Glen Brice

C.N.S. Genetics

g.brice@sghms.ac.uk

Mr. Richard Collin

Ophthalmologist

Dr. Anthony Stanton

Dr. Russell Mellor

Pip Sharpe

http://www.lymphoedema.org/lsn/lsn060.htm#BCRL

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Join us as we work for lymphedema patients everywhere:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Subscribe: AdvocatesforLymphedema-subscribe@yahoogroups.com

Pat O'Connor

Lymphedema People / Advocates for Lymphedema

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For information about Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

For Information about Lymphedema Complications

http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/phpBB3/viewforum.php?f=3

For information about How to Treat a Lymphedema Wound

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

For information about Lymphedema Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

For information about Exercises for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

For information on Infections Associated with Lymphedema

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

For information on Lymphedema in Children

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

Lymphedema Glossary

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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Lymphedema People - Support Groups

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Children with Lymphedema

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.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Lipedema Lipodema Lipoedema

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.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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All About Lymphangiectasia

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.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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Lymphedema People New Wiki Pages

Have you seen our new “Wiki” pages yet?  Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more.  Come and take a stroll! 

Lymphedema Glossary 

http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing 

Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema 

Arm Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema 

Leg Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema 

Acute Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema 

The Lymphedema Diet 

http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet 

Exercises for Lymphedema  

http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema 

Diuretics are not for Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=diuretics_are_not_for_lymphedema 

Lymphedema People Online Support Groups 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_people_online_support_groups 

Lipedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema 

Treatment 

http://www.lymphedemapeople.com/wiki/doku.php?id=treatment 

Lymphedema and Pain Management 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pain_management 

Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)

http://www.lymphedemapeople.com/wiki/doku.php?id=manual_lymphatic_drainage_mld_complex_decongestive_therapy_cdt 

Infections Associated with Lymphedema 

http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema 

How to Treat a Lymphedema Wound 

http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound 

Fungal Infections Associated with Lymphe dema 

http://www.lymphedemapeople.com/wiki/doku.php?id=fungal_infections_associated_with_lymphedema 

Lymphedema in Children 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children 

Lymphoscintigraphy 

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphoscintigraphy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Extraperitoneal para-aortic lymph node dissection (EPLND) 

http://www.lymphedemapeople.com/wiki/doku.php?id=extraperitoneal_para-aortic_lymph_node_dissection_eplnd 

Axillary node biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=axillary_node_biopsy

Sentinel Node Biopsy 

http://www.lymphedemapeople.com/wiki/doku.php?id=sentinel_node_biopsy

Small Needle Biopsy - Fine Needle Aspiration 

http://www.lymphedemapeople.com/wiki/doku.php?id=small_needle_biopsy 

Magnetic Resonance Imaging 

http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

Lymphedema Gene FOXC2

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_foxc2

 Lymphedema Gene VEGFC

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_vegfc

 Lymphedema Gene SOX18

 http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_sox18

 Lymphedema and Pregnancy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pregnancy

Home page: Lymphedema People

http://www.lymphedemapeople.com

Page Updated: Dec. 17, 2011