Researchers worldwide can now access data from Enroll-HD
As of February this year, the first wave of data from Enroll-HD is now available for researchers around the world to ask new questions about HD. Making this first “data cut” available is a major milestone in the study. It is the culmination of years of effort by participants, site staff, study coordinators, quality control experts, information technology specialists, and many others who have joined forces to make it possible. “It’s a huge and tremendous effort,” says Jean-Marc Burgunder, MD, chair of the European Huntington’s Disease Network executive committee. “To have this done in an organized way, and have this data cut, is tremendous.” The philosophy that motivates Enroll-HD is open access, so that any researcher at a recognized research institution, university or biomedical company can request the data through the Enroll-HD website. “The general thinking is that the more people who have a look at the data, the more information you can get out of the data, and the more use you can get,” says Burgunder, who is professor of neurology at University of Bern in Switzerland and affiliated with the University of Sichuan in Chengdu, China. Enroll-HD data is free to access, with very few strings attached: Researchers must sign an agreement stating that they will not try to identify any person in the study, and are asked to credit Enroll-HD in published work.
What does the data include?
Almost everything collected during an Enroll-HD site visit is made available, except any identifying information such as a name, date of birth or address. It includes basic information such as height, weight, and medical history—what medications people have had, what nutritional supplements or other kinds of therapies they have had (e.g. sleep therapy), and also what other illnesses they have ever been diagnosed with. It also includes the results of all the tests that measure movement as well as how well people think, use words, remember things, and get through the day. Researchers can make special requests for other data that are not included in the dataset. (To protect privacy, this information is all stored with number codes separate from the ID in the study database. Real names are never used.)