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Genetic and Rare Diseases Information Center (GARD)

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Milroy disease


Other Names for this Disease

  • Congenital hereditary lymphedema
  • Early onset lymphedema
  • Hereditary lymphedema
  • Hereditary lymphedema 1
  • Milroy's disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

Are there any clinical trials or testing being done anywhere on Nonne-Milroy disease?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How can I learn about research involving Nonne-Milroy disease?

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. While there are no studies specifically for Nonne-Milroy disease listed at this time, there are three clinical trials enrolling people with lymphedema in general. We have listed the study titles and links to Web pages where you can read more about them below.  After you click on a study, review its 'eligibility' criteria to determine its appropriateness. Use the study‚Äôs contact information to learn more.

Validation of Metrological Properties of Questionnaire of Quality of Life LYMPHOQOL
http://www.clinicaltrials.gov/ct2/show/NCT01922635?term=Nonne-Milroy+disease&recr=Open&no_unk=Y&rank=1

Imaging Lymphatic Function in Normal Subjects and in Persons With Lymphatic Disorders
http://www.clinicaltrials.gov/ct2/show/NCT00833599?term=Nonne-Milroy+disease&recr=Open&no_unk=Y&rank=2


Validation of a New Method of Limb Volumetry
http://www.clinicaltrials.gov/ct2/show/NCT01574911?term=Nonne-Milroy+disease&recr=Open&no_unk=Y&rank=3

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
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov
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.
http://clinicaltrials.gov/ct2/info/understand

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:
http://www.nlm.nih.gov/medlineplus/tutorials/clinicaltrials/htm/index.htm

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.
http://rarediseases.info.nih.gov/resources/5#category17

Last updated: 10/17/2013

Is testing available for Milroy disease?

Yes. GeneTests lists the names of laboratories that are performing clinical and research testing for Milroy disease. Clinical genetic tests are ordered to help diagnose a person or family and to aid in decisions regarding medical care or reproductive issues. If the disease-causing mutation in a family is known, molecular genetic testing of at-risk relatives ensures identification of those who will benefit from treatment early in the disease course and identifies unaffected heterozygotes who warrant genetic counseling as their offspring are at a 50% risk of Milroy disease.[1] Talk to your health care provider or a genetic professional to learn more about your testing options. 

You can learn more about the difference between clinical and research testing at the following information page developed by the Genetic Home Reference. 
http://ghr.nlm.nih.gov/handbook/testing/researchtesting
Last updated: 7/29/2011

How can I find a genetics professional in my area?

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:

Last updated: 11/27/2014

References
Other Names for this Disease
  • Congenital hereditary lymphedema
  • Early onset lymphedema
  • Hereditary lymphedema
  • Hereditary lymphedema 1
  • Milroy's disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.