Sorry again.

I have been reading about electrophysiological testing. Has anyone had this done in regards to just testing for myotonia and types of myotonia?

I've read this testing is for cardiac problems and for testing the compound muscle action potential in myotonias. Forgive my ignorance. I really need to be taught a thing or two.

I think they probably are referring to an EMG and possibly nerve conduction study. EMGs aren't too bad, but I hate the conduction studies. They use the same needles but deliver a series of shocks to see how the signal is transmitted to the brain. The only side effects of either would be some bruising from the needles, but they are tiny and I think it's more the thought that gets you :-)

I have heard from several people privately over the past months who were really excited at first about the study but either weren't contacted after initial inquiries or felt that the process was very slow (particularly when they had hoped to get DNA testing).

My concern is that it has taken them so long to get just 100 participants in all those locations combined. I do think that says something about lack of organization and coordination. I have seen this before with privately funded studies. If it is a grant through the National Institutes of Health it seems to be very different in terms of time management and publication.

Many studies offer a stipend for mileage and overnight housing for those who are too far to make the trip in one day, but I don't think I would participate if I had to go more than an hour or two. I'm really not sure what you will benefit. For those with a periodic paralysis I can see more potential if they are actually able to get blood samples for DNA testing send off the the appropriate lab. Theat testing is much less reliable at this point and any opportunity to help find new mutations and identify sodium channel disorders would be worth considering.

You might want to contact Laura who is listed in the study information and ask her some of your questions. Maybe she can give you the status of the project and when they expect to finish and publish the findings. Let us know if you get more information -

Jan

Hi Judy - I have responded 3 times to various postings for studies by CINCH over the last 3 years. I have never received even the courtesy of an acknowledgment of my responses to their e-mails. They have contacted me, so I figure they must be looking for participants, no?
Anyway, Jan has told me (and I'm sure she will reply to your inquiry), that CINCH seems not to be as responsive or as organized as one might expect a research group to be. Since I have been involved in medical research projects associated with my work, I can say with little hesitation that if you get a grant or other funding for a study, you have to have presented all sorts of plans, guidelines, parameters, goals, AND a time frame for your study. I'm heartened to hear that you were contacted - at least it means they aren't dead in the water. One would think they would contact every respondant, to make sure they have a large enough pool of potential participants, since all studies require candidates to answer questionnaires, and many will be turned down based on their answers. (For instance, many studies can only take people within certain age ranges, or who have no chronic illnesses like diabetes or high blood pressure, or who are on certain medications or have allergies, etc...). They have to weed out the ones who don't fit their parameters, in order for the study to have meaning and be statistically balanced.
As far as the electrophysiological testing - maybe they are simply talking about the EMG's? Those are "invasive" in that needles are used - but they are a very basic test for our conditions, and so I would imagine that would be one baseline test they would want on each study "victim"! They have to do the same tests and studies on each member of the study, so that they can then compare and analyze the info they gather, to write their findings and conclusions or hypotheses. I hope all this is at least a little helpful. Lois

Hi
I was contacted by Laura by phone and email in the past three months now. I have had very little to do with Cinch ever, as a matter of a fact I didnt even know who they were and my experience with them has been positive so far. I was told I would get paid airfare, and a night in a hotel and $100 for my participation, dont quote me on that amount exactly I will ask again when I call this week. I am going to ask those same questions that Jan posted cause they are good questions to find out. But like I said so far in my little experience it has been fine.
Jody

I finally got an e-mail reply from them. They have no interest in dealing with anyone who won't come to them. They feel they can get a representative sampling just by waiting for the mountain to come to Mohammed. To me, that's weird, since all the testing can be done through a local or long-distance provider, and surveys, interviews and questionnaires can be done by phone, fax, mail and e-mail. Seems to me they could do almost everything they need to do IRL during a single on-site visit. I don't get a real sense of motivation or interest from this person, and she needs me more than I need her! I've got Jan!!! Oh well... Lo