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’s 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

Yes. The Genetic Testing Registry (GTR) provides information about the labs that offer genetic testing for Milroy disease. The intended audience for the GTR is health care providers and researchers. People with questions about genetic testing should speak with a health care provider or genetics professional.

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.^[1]

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by GeneTests, the American College of Medical Genetics, and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.