Following an announcement last month, the COHORT study is transitioning to become a new global HD study.

In late June 2011, study funders CHDI Foundation, Inc., decided to conclude COHORT. The study is being combined with its European counterpart REGISTRY into a worldwide study called Enroll-HD. A short interruption between studies was deemed necessary in order to concentrate on startup activities for Enroll-HD, said UI HDSA COE COHORT Coordinator Michelle Harreld.

“The transition between the two studies was not totally seamless,” Harreld said, “but progress continues toward making sure Enroll-HD is up and running by the end of the year.”

Study designers are describing Enroll-HD as the next phase of COHORT. The overall goal is of Enroll-HD is to accelerate the development of treatments for HD by compiling data and biological samples collected from participants at their annual visits.

Researchers say the information collected could lead to a better understanding of the natural history of HD. Study designers also want to make this data available for any HD researcher worldwide to use in designing their own studies or testing hypotheses. Sub studies that could be part of Enroll-HD will also be facilitated.

Additionally, researchers say Enroll-HD can serve to speed up recruitment of participants for clinical trials of HD treatments in the coming years. They say Enroll-HD participants could be notified of a clinical trial they are eligible for based on the qualifications required by the trial.

By combining COHORT and REGISTRY, Enroll-HD will build on the many successes of the two studies. The proposed plan is to roll the previously collected COHORT data into the new database, Harreld said. The database of information will be much larger than the COHORT database, given that Enroll-HD is a global study. This could lead to researchers reaching more conclusions about HD given they will be working with a larger sample size.

The larger database could also allow researchers to have an easier time recruiting participants for clinical trials, because there will be more people to ask if they want to take part in a given trial.

The goal is to have as many COHORT sites as possible transitioned to Enroll-HD by the end of 2011, Harreld said. When the UI HDSA COE is prepared to transition to Enroll-HD, COHORT participants will be contacted with further information. Most participants will notice little difference between COHORT and Enroll-HD study visits.

“Thank you for all your continued commitment to HD research,” Harreld said. “We really appreciate your patience and understanding through this transition and hope to see you back soon for your first Enroll-HD visit.”