Here’s How You Can Get Involved In Huntington’s Non-Clinical Research

In a previous section, I talked about the many questions one might have when joining a clinical trial. Many questions, worries, risks, hopes and opportunities come with participation in a trial that forces you to take experimental medicine.

But participation in clinical trials is not for everyone. In fact, you should not participate in any clinical trials on Huntington’s disease (HD) unless you, your family and your doctors all believe that you are physically and mentally ready to not only join, but also complete the study. Signing up and leaving a test costs the study, and it can damage the overall results.

The hope for clinical trials is that it is a good experience for everyone involved.

If a clinical trial does not seem perfect, you might consider participating in an observational study or individual surveys. Surveys are usually a one-and-done opportunity, so they don’t involve multiple trips to a research clinic.

In observational studies, humans are observed, but researchers do not influence results. Observational studies sometimes require trips to HD clinics, and sometimes they can be done from home.

Neither surveys nor observational studies involve medication, as sponsors are not going to bring new drugs to market. However, they provide health professionals with valuable insights that will hopefully improve education and care. They can also help those who organize clinical trials make sure they are properly planned.

Observational studies can give a wider range of people the opportunity to participate in research. For example, clinical trials of Huntington’s disease are currently open only to people who have been diagnosed with some degree of symptoms. This leaves a large part of our community, including those still at risk and those who have tested negative or positive and who show no symptoms.

I believe that participating in any research, whether clinical or observational, is empowering, rewarding and an opportunity for all of us to give back.

Observational studies and research surveys are not always easy to find, so below I’ve outlined a handful of opportunities available to you and your family and friends affected by HD.

Online surveys

  • If you are at risk and live in the United States, here is a survey that aims to learn more about genetic testing.
  • The Huntington’s Disease Society of America has additional surveys for a variety of people, including those at risk, caregivers and people with symptoms, among others. Take a look at their surveys and studies here.

Observational studies

  • One large observational study in particular had a huge impact on the Huntington community: Enroll HD. This study enrolled more than 20,000 people from around the world and is usually open to all affected by HD, including caregivers, at-risk people, those who are gene positive or negative, and those currently with symptoms. You have to travel to an HD clinic about once a year for a half-day visit, but it also gives you the opportunity to meet with a lot of HD experts. I would encourage everyone who is qualified to join Enroll today by visiting the website and contacting your nearest clinic.
  • According to the Huntington’s Disease Youth Organization’s Facebook page, the organization is working on an online observational study focused on youth HD. Juvenile HD is a subset of people who usually develop symptoms before the age of 18 years. The survey will focus on perspectives and insights of those with juvenile HD and their primary caregivers. This is a great new study that aims to help us learn more about a segment of patients that is usually forgotten. I will write another column about this and mention it when it comes to life.

We all have opportunities to influence research, whether through clinical trials or observational studies. If you can find time in the next two weeks, I challenge you to click on the links above and give your answers to speed up better care and future treatments. Most studios are completely anonymous, and you don’t need to invest a lot of time.

If you have any questions about observational studies or surveys, please share them in the comments below. Thank you for your consideration!


Note: Huntington’s Disease News is a strictly news information website about the disease. It does not give medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or other qualified physician on any questions you may have about a medical condition. 36. Never ignore professional medical advice or delay looking for it because of something you have read on this site. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and aims to spark a discussion on issues related to Huntington’s disease.

BJ has played a role in the Huntington’s disease (HD) community since his mom’s diagnosis in 1995. He and his family host an annual Hoop-A-Thon fundraiser that helped raise more than $ 1 million for the HD Society of America. BJ co-founded the HD Youth Organization, an international nonprofit helping youth affected by HD. He served as its board member for over 10 years. Professionally BJ has been working in the pharmaceutical industry for the past 10 years in various positions. He has tested negative for HD, but remains keen to support the community and hopes this rubric will bring positive energy into the lives of many people.