Posted - June 2016 in HSPRF News
HSPers keen to participate
Slow down… be patient! Please do not e-mail us. We will communicate with you when the time comes… you will not miss out on hearing about it.
“Every week we get new requests and inquiries from all over the world about participating in HSP clinical trials and that has been happening now for many months ” says Frank McKeown, President of the HSP Research Foundation.
So here is some information for everyone with an interest in the proposed clinical trials to test a drug treatment for HSP:
We’re not there yet
When the time comes, and we’re not there yet, there will be numerous and varied communications letting everyone know about the trials and about participation. You will not miss hearing about it, no matter where you live, just as long as you receive regular communications from your HSP support group in your particular country, so if you are not signed up for that, now would be a great time to do so. There will be various medical and logistical eligibility criteria such as mutation type, symptom profile and location for example that potential participants will need to meet to be accepted into the trials.
But ahead of that, it is envisaged that a registry of interest will be established online for everyone globally. The medical researchers may already have enough candidates in their own databases for the very early stage trials, but the numbers required for later stage trials, assuming we experience success and get that far, are much larger.
The quarterly e-mail/website update will continue to give progress reports on the research and the push towards clinical trials to members of the HSP community connected with this Foundation. Just keep reading and you will know what’s going on. There is a lot to do between now and then… completion of the current drug validation studies; plans and perhaps preclinical trials needed to gain regulatory approval to hold clinical trials; experiments to establish good markers and measures of the HSP condition; financing, personnel… and on and on. The reason nobody has heard about plans for a participant registry is that those plans cannot be made until the answers to other questions are known… and we are not there yet.
The interest from so many people is fantastic, but there is a need to be patient. The process is going as far and as fast as resources of time, people and money, as well as logistical considerations will allow. In the meantime, your very tangible financial support is absolutely fundamental to continuing progress.