Medical Progress

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
• Hunter Outcome Survey
• Ongoing Clinical Trials
• Medical Congresses
• New Publications on Hunter Syndrome
• "Join the Search" Campaign

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

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Hunter Outcome Survey

Disease outcome surveys are programs that study people with a particular disease in order to learn more about it. Shire Human Genetic Therapies recently worked with experts in the management of Hunter syndrome (MPS II) to design the ongoing Hunter Outcome Survey (HOS). Over time, HOS will help the medical community gain a better understanding about the natural history of Hunter syndrome, disease management, and medical outcomes. HOS is designed to support the gathering, analysis, reporting, and sharing of data around the world about Hunter syndrome.

Patients worldwide with Hunter syndrome are encouraged to participate, and participation is through your physician. Participating centers are enrolling patients on a confidential basis and entering medical and quality of life data. Patient identity is blinded so that confidentiality is ensured. Patients are followed at predetermined intervals during the normal course of their medical care. If you have questions about HOS, please speak with your doctor.

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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.

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Medical Congresses

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.

Of particular interest for patients and their families, the 10th International Symposium on Mucopolysaccharide and Related Disease (June 26-29, 2008) features a full program specifically designed for families. The 3-day family program includes dozens of educational sessions (eg, MPS basics, disease progression, and patient perspectives); a gala dinner; youth camping; and child-care options.

Below is information on congresses of interest taking place in 2008 and 2009.

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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.

To enrich discussions with your doctor, you may wish to print out the abstracts and take them along to your medical appointments.

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"Join the Search" Campaign

Join the Search for Patients with MPS is a nationwide campaign launched by the National MPS Society that urges parents and physicians to help identify children with MPS in order to drive earlier diagnosis and to ensure optimal disease management. Here are three things you can do to support the campaign:

• Visit the photo exhibit. The campaign launched with the unveiling of a photo exhibit that celebrates the individuality of MPS patients and visually demonstrates the varying degrees of clinical presentation and severity that make MPS unique and sometimes challenging to recognize.
• Join the search. Physicians and other healthcare providers who care for children during their path to diagnosis are being asked to take a pledge to search for patients with MPS. See who's already joined the search and encourage others to visit this site and get involved.
• Share your story. If you or someone you know is affected by MPS, please share your MPS story and help us celebrate the individuality and triumphs of those affected by MPS.

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