The 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 no studies involving Laing distal myopathy specifically are listed at this time, there is a trial entitled Molecular and Genetic Studies of Congenital Myopathies which may be of interest to you. Click on the title to learn more. Review its "eligibility" criteria to determine its appropriateness. You can contact Elizabeth Taylor DeChene, MS CGC by phone 617-919-2169 or e-mail email@example.com for further details.
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 search for
Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If you are interested in enrolling your child in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
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 Research (ORDR), part of the National Institutes of Health.
The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. Our search of this database identified the following research study which may be of interest to you. It is looking at how myosin affects skeletal muscle.
Genetics and Molecular Biology of Myosin
Sanford Bernstein, PhD
San Diego State University
Online bio: http://www.bio.sdsu.edu/faculty/bernstein.html
In addition, we suggest contacting the following organizations and periodically exploring their Web sites for further information on research relevant to congential myopathies and Laing distal myopathy:
Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, AZ 85718-3208
Toll-free: 1-800-FIGHT-MD (1-800-344-4863)
Web site: http://www.mdausa.org/
Research page: http://www.mdausa.org/research/
Muscular Dystrophy Campaign
61 Southwark Street
London SE1 0HL
Phone: 0800 652 6352; (+44) 0 020 7803 4800
Fax: (+44) 0 020 7401 3495
Web site: www.muscular-dystrophy.org
Research page: http://www.muscular-dystrophy.org/research