Other Names for this Disease
- Congenital hereditary lymphedema
- Congenital primary lymphedema
- Early onset lymphedema
- Hereditary lymphedema
- Hereditary lymphedema 1
Your QuestionAre there any clinical trials or testing being done anywhere on Nonne-Milroy disease?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
Validation of Metrological Properties of Questionnaire of Quality of Life LYMPHOQOL
Imaging Lymphatic Function in Normal Subjects and in Persons With Lymphatic Disorders
Validation of a New Method of Limb Volumetry
You can check ClinicalTrials.gov for additional on-going studies. To do so click on the link and use 'lymphedema NOT cancer' or 'Milroy' as your search term.
You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine if you are eligible for any clinical trials. If you are located outside the United States, and would like to be contacted via telephone, you will need to provide your telephone number in full, including area code and international dialing prefix.
Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine:
Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases (ORD), part of the National Institutes of Health.
If a mutation in the responsible gene has been identified in a family, genetic testing for at-risk relatives may identify those who may benefit from treatment early in the disease course. Prenatal testing for pregnancies at increased risk may also be available.
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- The National Society for Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
- Glen W Brice, Sahar Mansour, Pia Ostergaard, Fiona Connell, Steve Jeffery, and Peter Mortimer. Milroy Disease. GeneReviews. September 25, 2014; http://www.ncbi.nlm.nih.gov/books/NBK1239/.