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
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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Patients & families needed for a new study on the social issues facing people with Hunter Syndrome
Researchers from the University of California, San Francisco and Pacific Graduate School of Psychology are planning a new study investigating social issues facing MPS II patients of all ages. The goal is to gather information of daily behavior and the impact of the disease on family functioning, gathering information on health-related quality of life, adaptive behavior, and the behavior of people with MPS II and its impact on family function.
If you choose to participate, you will be asked to complete questionnaires about how you or your child are living in the presence of a chronic illness. Your individual responses will be kept completely confidential. Participation in this study will take approximately one and a half hours for caregivers, and only about 15 minutes for patients. The questionnaires can be completed over the phone.
If you are interested in participating, you may contact Dr. Wendy Packman or Mary Needham at the Pacific Graduate School of Psychology by calling (650) 421-4870 or email us at MPSresearch@gmail.com. We will be happy to answer any questions you may have.
You can also leave your contact information with your local MPS Society with permission for us to contact you.
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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.
Below is information on upcoming congresses of interest.
NSGC 2009 D.C. Regional Meeting
Date: April 17, 2009
Organization: National Society of Genetic Counselors
Location: Washington, D.C.
Related Web Site(s): http://www.nsgc.org/
NORD Annual Gala
Date: May 14, 2009
Organization: National Organization for Rare Disorders
Location: Washington, DC
Related Web Site(s): http://rarediseases.org/
11th International Congress on Inborn Errors of Metabolism
Date: August 29-September 2, 2009
Organization: Society for Inherited Metabolic Disorders (SIMD)
Location: San Diego, CA
Related Web Site(s): www.iciem2009.org
The American Society of Human Genetics 59th Annual Meeting
Date: October 20-24, 2009
Organization: The American Society of Human Genetics
Location: Honolulu, HI
Related Web Site(s): http://www.ashg.org/2009meeting/
National MPS Society 2009 Family Conference
Date: December 17-20, 2009
Organization: National MPS Society
Location: Orlando, FL
Related Web Site(s): http://www.mpssociety.org/
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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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