treatment and follow-up care as needed. Payment for any such 
treatment must be provided by you or your third party payor, if 
any (such as health insurance, Medicare, etc.) 
We cannot offer treatment beyond the 1-year trial period which is 
paid for by limited research funding. Such experimental gene 
therapy is not covered by medical insurance policies or by state- 
or federally-funded healthcare programs. In summary, we cannot 
provide this experimental treatment beyond this 1-year research 
trial . 
Alternatives : 
If you do not choose to participate in this study, your regular 
physician can provide other conventional therapy for the symptoms 
of Hunter syndrome. Such therapies might include: constant 
positive airway pressure (CPAP) , tonsillectomy, tracheostomy, 
medicines to improve heart function, or surgery to replace 
defective heart valves. 
Conf ident ial i ty : 
The records of this study will be kept private. In any sort of 
report we might publish, we will not include any information that 
will make it possible to identify subjects. Research records will 
be kept in a locked file and in your chart at the University of 
Minnesota Hospital and Clinic; only the researchers and certain 
regulatory agencies (such as the U.S. Food and Drug 
Administration) will have access to the records. 
Because there is great public interest in gene therapy, the news 
media will want to know about this research study and the 
participants. We suggest that you consider the long-term 
implications of such publicity on you and your family. Although 
we may release general information about this study to the press, 
you will not be identified by name or photograph. However, if you 
choose to discuss your participation in this study with the press, 
we ask you to discuss this with us and to sign a "release form" 
authorizing us to discuss the details of your condition and 
response to this experimental treatment. 
Voluntary Nature of the Study: 
Your decision whether or not to participate will not affect your 
current or future relations with the University. If you decide to 
participate, you are free to withdraw at any time without 
affecting those relationships. 
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