Staying informed of medical progress can give you insights into the latest advances in managing Hunter syndrome. Below are some important resources to keep you up to date.
National MPS Society
The National MPS Society provides frequent updates on news and events related to Hunter syndrome and other MPS syndromes. This includes news on medical advances, treatments, clinical trials, and scientific research. It also highlights stories in the media, annual family conference updates, public awareness fundraisers, and patient survey results. Visit the National MPS Society’s “News and Events” page for more information: www.mpssociety.org.
Ongoing Clinical Trials
You can get the updated status of the latest research and ongoing clinical trials in Hunter syndrome by searching the online database at www.clinicaltrials.gov. It is a registry of federally and privately supported clinical trials conducted in the United States and around the world. You can learn about a trial’s purpose, who may participate, locations, and phone numbers for more details.
Medical organizations are an excellent resource for staying current on the latest developments in genetics and metabolic disorders, including Hunter syndrome. Most organizations host annual congresses that provide educational forums and networking opportunities for clinicians, scientists, industry, and patients.
New Publications on Hunter syndrome
To do your own research on the latest information and advances in Hunter syndrome, you can search the medical literature at www.pubmed.gov. You can freely obtain abbreviated versions (“abstracts”) of published articles from medical journals; in some cases entire articles are available free of charge.
The best guidance on your disease and how to manage your disease comes from your doctors and their staff. While there are a number of sources of medical literature available, before you make any medical decisions, you should talk to the medical professionals involved in your care to ensure that you understand the information you are reading and help decide what it may or may not mean for you. It may be helpful to print out the information and articles from your search, and bring them along to your medical appointments.
You should understand that medical literature often contains complex medical and scientific information that can be misunderstood or be very difficult to understand. Different sources of medical information are also subjected to different levels of review and analysis, making some articles more highly regarded (such as peer reviewed literature) than others. We suggest that you discuss the information that you find with your doctors, before making any medical decisions.