The research measure of disease progression utilized in Huntington's patients is the Unified Huntington's Disease Rating Scale (UHDRS). Because frequent UHDRS testing is not possible in the usual office setting, another secondary objective of HDDW therapy trials is to define an appropriate set of measures that can be used in the primary care setting and correlate as best as possible with UHDRS. For this purpose, HDDW will provide each trial participant (who must also have a dedicated helper) with web-based and centrally organized tests for motor, cognitive, behavioral and functional capacity components. Serial results will then be supplied (in readable form) to each participating physician, who may in turn supply this information to the individual. It is the HDDW goal that these measures can reproducibly be used in the medical office setting to assess individual patient response. It will be the individual participant's rate of disease progression, and specifically not the average of the group population that is to be the measured and reported to the treating physician.

A tertiary HDDW objective is to design the individual's treatment care plan so that if sufficient numbers of individuals participate in such care plans, we may be able to generalize treatment results to the larger population of Huntington's in a statistically sound manner. Therefore, the study will be designed from the onset to best capture such results. When HDDW statisticians determine that group results are significant, this result will be made immediately available to all trial participants and their physicians. These results, whether positive or negative, will also be immediately posted on the HDDW website in a manner that will protect confidentiality of participants.

Guarding participant confidentiality and ensuring participant safety is paramount to HDDW. Institutional Review Board (IRB), and Health Information Privacy and Protection Act (HIPAA) guidelines will be adhered to and enforced during all individual trials.

Lastly, HDDW is hopeful, but of course can not guarantee that these trials will be successful for an individual or that the data obtained will be useful to the larger population of Huntington's people. No drug proposed for these trials has been proved to be beneficial in people. But at the very least the HDDW trial design will accomplish the primary goal of bringing individuals to supervised medical care. It will also create and sustain a ready and willing reservoir of Huntington's people with known disease progression measurements with known and documented drug history.

We at HDDW believe hope is a good thing. And further, we at HDDW believe this hope has a sound scientific base. We believe there is reasonable chance that a one or more of these drugs, either alone, or in combination will be beneficial either for an individual, a small group, or the larger population of Huntington's people. Further, even if successful, we believe that none of these agents alone or in combination are likely to result in a cure. So even if successful agents are defined, the treatment of Huntington's will be similar to other chronic diseases; with the need for long term therapy. In this case, HDDW participants would be well positioned to enter trials of experimental drugs coming down the research pipe-line.