Huntington’s Disease is a rare disease. The HDSA presents this statistic on their website:

Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. (source)

30,000 symptomatic Americans. Although that sounds like a large number, in the big scheme of things, It’s not.

Lisa Genova helps us give it some context in her book, Inside the O’Briens.

She suggests that if you took all the symptomatic HD individuals in the whole United States of America and put them in Boston’s Fenway Park, they would fit comfortably. In fact, there would be more than 7,000 seats sitting empty.

30,000 is not a lot considering the population of the US is about 325 million. Even when you throw in the 200,000 individuals estimated to be at risk, it’s still a drop in the bucket.

This helps to demonstrate why participating in Huntington’s Disease research is so important. Good solid scientific evidence-based knowledge needs numbers in order to progress as quickly as possible.

It needs people. Both symptomatic individuals as well as the in-betweeners like us. It needs control subjects, like our gene-negative family members and loved ones. That’s the key to progressing these clinical studies in a speedy fashion.

I’m all about speed here as I’m sure you are too.

With that said, it’s not just about speed, but also quality. Science needs the right person for the right study and finding the right people for a particular study can be a large portion of the work.

That’s where programs like Enroll-HD can shine. What the heck is Enroll-HD?

What is Enroll-HD?

Enroll-HD is an observational study which means it collects data from a person and then repeats that data collection at pre-determined intervals of time in order to learn how things change.

In Enroll-HD’s case, the data is collected on a yearly basis. Here’s more from the Enroll-HD website:

Enroll-HD is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk. Enroll-HD is or will soon be up and running for HD families in North America, Europe, Latin America, Australia, New Zealand and some countries in Asia. It will eventually include more than 20,000 people. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD. (source)

Look at that number again:

It will eventually include more than 20,000 people.

That’s such a large number for one observational study when, again, you recall just how rare the actual disease is. Not only that, but this is a worldwide project. Look at the following map which demonstrates all the nations in the world where Enroll-HD is currently underway or the plans are in the works:

On the above map, countries in green are where Enroll-HD is currently underway or will soon begin and the orange countries are candidates to later join. (source)

Now that is a great pool of rich data that will only continue to grow and mature.