I am linked into the Predict HD study. It is a 5 year study that is happening United States, Canada, United Kingdom, Australia and Germany. It is studying both positive and negative individuals who are presymptoms. Basically I go to Toronto for 2 days every year and they do some cognitive, mood and motor skills testing along with an MIR every 2 years. They also take some fluids (not sure why, but not a big deal). You also bring someone and they do a questionnaire about you. All expenses are paid for including meals and the hotel room so no worries there.
Anyways here is the link to the website if anyone else is interested! https://www.predict-hd.net/content/predict-hd-locations
This is a video I helped make to show what it is like to be involved in the PREDICT HD study. Take a look and let me know if you have any questions!
I think it is important to let people know about participating in HD research. My first view on it was that I did not want to take part in any research since I felt that any of my information of being at risk for HD could get out and end up affecting my future. However, as many people do not know, everything is confidential and they are not allowed to release any personal information. In fact, most places will give you a number and refer to you as that number.
Of course it is beneficial for people to participate in HD research so doctors can learn more about HD through people who are at risk, who have it, or do not have HD in their family at all.
Nice to see you posting on this topic. I think your initial concern about your information being made public is a fair and common one. But yes, you are right, all research projects are sworn to confidentiality and should make that very clear when they ask you to participate.
Another good point you mention is the number ID. When we participate in HD research, they don't list our information under our name, they give us a number instead and we are only identifiable in the research project as a number. So that means even the researchers working on the research project won't know details such as your name, they will only see the number ID along with the research data.
I'm glad you agree that research participation is beneficial. Certainly researchers can learn a lot from all of us. Sometimes people think 'I don't have HD so what use can I be', but actually everybody no matter their situation can be very useful to learn more about how HD affects people and hopefully bring us that little bit closer to an affective treatment! Have you decided to participate in any research yet Seth?
MattIn reply to Seth
Yes I actually participated in a brief survey at this year's convention as well as signed up for a couple more to do. I have a phone interview next week and then hopefully get out to do the Predict HD research session.In reply to Matt
That's awesome Seth! Really great to hear you're getting involved with research.
I think you also bring up another good point with the fact that 'participating' in HD research does not always mean going to a clinic and being a guinea pig. Filling out a research survey or speaking to someone who is conducting a study online or on the phone is just as important and is seen as participating in research.
Nice :)In reply to Seth