Taking part in Enroll-HD

Taking Part in Enroll-HD

Enroll-HD

Welcome

Welcome, and thank you for your interest in Enroll-HD! The success of the study depends on volunteers like you around the world who become a part of HD research. 

Enroll-HD is actively recruiting participants in Europe, North America, Latin America, and Australasia. Visit the study sites page to find a clinic near you. 

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Enroll-HD

Taking part in Enroll-HD

If you decide that you want to join Enroll-HD, you’ll make an appointment to visit your local study site. Your Enroll-HD study visits will be a little bit like a regular visit to an HD clinic, but different in some important ways. The main difference is that instead of being a patient you’re now a study participant, which means that you are providing information rather than getting counseled about your health. 

The time your visits take will differ slightly depending on your local site. Your first visit may take between 1½ and 2½ hours, and follow-up visits may be less than an hour or up to two hours. At some larger sites that also provide regular medical care for HD, it may be possible to schedule your regular clinic visit and your Enroll-HD visit for the same day. 

At each study visit, you’ll meet with a neurologist or other healthcare professional to answer questions and complete a series of evaluations. The types of information collected are described below.   

While completing these evaluations you’re officially a research participant rather than a patient. The people working with you are now in the role of researcher, even if they are normally one of your healthcare providers. That means that during this visit they won’t tell you how well you do on the evaluations, or give you advice regarding your health.

Informed consent

Before you can get started in the study, you will need to read and sign an informed consent form- you can learn more about informed consent here. At your first site visit, you will talk over the informed consent form with the site coordinator or study nurse, who can answer all your questions.

Privacy

While protecting the privacy of study participants is paramount, Enroll-HD clinical data collected from participants is made available to verified researchers and scientists all over the world so we can understand more about how HD happens in people and investigate new ideas for effective treatments. You can read more about how your privacy is protected here.

Enroll-HD

What happens at each visit?

At each study visit, you’ll meet with a doctor or a trained site staff member to answer questions and complete a series of evaluations. The types of information collected are described below. Some components are optional and will only be completed if you decide to do so (e.g., describing your family history with HD).

General

Sociodemographic information (such as age, education) will be collected, your height and weight will be measured, and you’ll be asked questions about your lifestyle (such as alcohol and caffeine consumption).

Medical History

You’ll be asked questions about your medical history – whether you have symptoms of HD, and if so what they are and when you were first affected - as well as questions about other medical conditions you have experienced.

Current medicines and therapies

Any medicines or nutritional supplements you are taking or have taken in the past will be noted, and you’ll also be asked about other therapies you may have used, like physical therapy or counseling.

Motor

You’ll complete motor assessments to evaluate your movement, which involve tasks such as finger tapping and walking under observation. Other physiotherapy assessments may also be performed, such as the timed “up and go” test.

Function

You’ll be asked a series of questions to assess your level of independence and functional capacity, including questions about your occupation, managing your finances, looking after yourself at home, and driving.

Behavior

You’ll be asked about your mood, whether you’ve been depressed or are having other psychological or emotional difficulties.

Cognition (thinking and decision-making)

You’ll take some tests to measure thinking and focus, which are like brainteasers or puzzles that you do with paper and pencil, like matching symbols to digits.

Genotyping

At your first visit, a blood sample will be taken to check the number of CAG repeats in your huntingtin gene. This happens for every participant, even those who do not know their gene status. The results of this test are used for research purposes only, and will not be reported back to you, your doctor, or anyone else at the site, nor will they be included in your medical records.

Quality of life

You and your caregiver will be asked questions about your quality of life.

Health economics

You’ll be asked questions related to health economics, such as how HD has affected your ability to work, and your financial costs associated with HD treatment and care.

Family history (optional)

If you so decide, you’ll be asked to describe your family history of HD.

Biosample donation (optional)

If you agreed to do so when completing your informed consent form, you’ll be asked to provide additional blood samples at each study visit for research biobanking. Note that these blood samples are collected in addition to the mandatory blood sample collected at your first visit that is used for CAG genotyping.

General

Sociodemographic information (such as age, education) will be collected, your height and weight will be measured, and you’ll be asked questions about your lifestyle (such as alcohol and caffeine consumption).

Medical History

You’ll be asked questions about your medical history – whether you have symptoms of HD, and if so what they are and when you were first affected - as well as questions about other medical conditions you have experienced.

Current medicines and therapies

Any medicines or nutritional supplements you are taking or have taken in the past will be noted, and you’ll also be asked about other therapies you may have used, like physical therapy or counseling.

Motor

You’ll complete motor assessments to evaluate your movement, which involve tasks such as finger tapping and walking under observation. Other physiotherapy assessments may also be performed, such as the timed “up and go” test.

Function

You’ll be asked a series of questions to assess your level of independence and functional capacity, including questions about your occupation, managing your finances, looking after yourself at home, and driving.

Behavior

You’ll be asked about your mood, whether you’ve been depressed or are having other psychological or emotional difficulties.

Cognition (thinking and decision-making)

You’ll take some tests to measure thinking and focus, which are like brainteasers or puzzles that you do with paper and pencil, like matching symbols to digits.

Genotyping

At your first visit, a blood sample will be taken to check the number of CAG repeats in your huntingtin gene. This happens for every participant, even those who do not know their gene status. The results of this test are used for research purposes only, and will not be reported back to you, your doctor, or anyone else at the site, nor will they be included in your medical records.

Quality of Life

You and your caregiver will be asked questions about your quality of life.

Health economics

You’ll be asked questions related to health economics, such as how HD has affected your ability to work, and your financial costs associated with HD treatment and care.

Family history (optional)

If you so decide, you’ll be asked to describe your family history of HD.

Biosample donation (optional)

If you agreed to do so when completing your informed consent form, you’ll be asked to provide additional blood samples at each study visit for research biobanking. Note that these blood samples are collected in addition to the mandatory blood sample collected at your first visit that is used for CAG genotyping.

Enroll-HD

Taking part: FAQs

Frequently asked questions and answers relating to taking part in Enroll-HD.

For more general information on taking part in CHDI-sponsored platform studies, please visit the FAQ page.