Every advance we make in medicine is supported by research studies involving people. Participating in research can be an interesting and rewarding way to contribute to the scientific community. HDNA is involved in many research projects and supports researchers across Australia.

Before deciding to participate in research there are some important details to know. 

1. Voluntary

The first is to remember that all research is voluntary. You are never under obligation to participate in a research study and doing so does not affect the clinical care or services that you receive. When you volunteer in research, keep in mind that you can leave the study at any time (even after you have started). 

2. Eligibility

All research studies have a set of criteria that determines who can be enrolled into the study and who cannot. These criteria may relate to a person’s biological sex, their age, their level of education or their medical history. Researchers are not able to change these criteria once the study has started. This means that from time to time, you might find you are not eligible for a study even though you are willing to take part. 

3. Commitment

All research studies involve some level of commitment from participants. You will be asked to do certain things and give up a certain amount of your time. All studies have to be approved by ethics committees, and there are tight regulations in place to protect participants from harm. Always read the explanatory statement and consent form so that you know exactly what you are agreeing to do, where you need to travel and how much of your time is needed for participation.  

4. Control Groups

This is a phrase often used in research to describe a group of participants who make up a comparison group. The control (or comparison group) might not receive any treatment, for example they may receive a placebo or an alternative form of intervention. The outcomes of this group are then compared to the group of participants who received the active treatment or intervention of interest. 

The important thing to remember is that researchers are not able to choose who is in the control or the intervention group. Usually participants are randomly allocated (i.e., randomised) into one of the two or more groups and neither the researchers nor the participant know which group they are in.  This also means that in clinical trials to test new drug treatments, even if you volunteer you may not receive the actual study drug. Instead you might be in the control or placebo group. If you are in the placebo group you may be given a treatment that is an inactive placebo, which is not expected to have any effect on your body. In this way, clinical trials of study drugs are not like treatments. 

Before deciding to take part in any research or clinical trial, talk to people you trust, including a HD clinician, your GP and your friends and family. This way, you can consider all of the pros and cons and give yourself the opportunity to consider whether you would like to participate. 

Sound good? If you are still interested in research after reading the above, join our HD participant database. This database includes likeminded people, both with and without the abnormal HD gene who have consented to be contacted about current and upcoming HD research.  Researchers may contact you via phone or email to see if you are interested in participating. We make sure people on our database are contacted a maximum of three times per year to ensure you don’t feel pestered! Plus, you can say no to any study at any time!

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