July 24, 2014
A little over a year ago we began recruiting participants for the Anorexia Nervosa Genetics Initiative (ANGI). For those who haven’t heard, ANGI is a multi-national research study designed to discover the genetic factors that contribute to the development of anorexia nervosa (AN). We have sites in Denmark, Sweden, Australia, and here at UNC.
What has happened in the year since the launch has exceeded our wildest expectations. Our original goal for the UNC site was to have 120 blood samples collected by May 1st of 2014 and 500 by the end of recruitment in July, 2016. In May, we reported a total of 341 samples collected, almost tripling the original goal! Because we’ve received such an enthusiastic response, we have increased our final goal for UNC from 500 to 1500 from people with a history of AN and 1500 from people who never had an eating disorder.
The world over, we’ve already collected more than 2,500 samples! Thanks to the community and our participants – without whom none of this would be possible – we’ve raised the study-wide recruitment goal from 8,000 participants (with a history of AN) to 13,000.
In order to meet these new goals, we’ve augmented our recruitment efforts. At launch, we were only able to recruit women and girls for the study. After receiving comments from men in the community and from mothers of boys with AN, we made the case for including males in ANGI. Our argument was well-received. Since then, our doors have opened to men and boys who would like to participate. We have posted flyers all over UNC’s campus and throughout the greater Raleigh/Durham/Chapel Hill area. We have filmed brief commercials and put out press releases. Various conferences have requested materials to share with their attendees. We’ve even brought in people with CraigsList ads.
Finally, an independent initiative in the UK, Charlotte’s Helix has also emerged, in honor of the eating disorder advocacy work of Charlotte Bevan. Charlotte’s Helix, a collaboration of friends, family, organizations, and institutions all with ties to Charlotte, has set a goal of bringing in at least 1,000 DNA samples from the UK for anorexia genetics research.
Even with all these avenues, we know that we have not yet reached thousands of individuals who have suffered from AN at any point in their life who would like to donate their samples to help stop this crushing disorder. If you would like to join the effort to crack the genetic code of AN, don’t hesitate to contact us or take the eligibility survey directly to find out if you’re eligible.
Here’s to three more years of successful recruitment! Remember, our global goal is 25,000 samples by 2016!
If you or someone you know has suffered from AN or has never had an eating disorder and are in the United States, please visit the ANGI website at www.unceatingdisorders.org/angi, call us at 919-966-3065, or email us at firstname.lastname@example.org.
If you are in Australia, visit the ANGI website at https://angi.qimr.edu.au, or Freecall 1-800-257-179, or email email@example.com
If you are in the UK, we encourage you to visit https://www.charlotteshelix.net/ or email firstname.lastname@example.org to participate in a similar research effort.
For a more detailed description of the study, please see our blog post on the study launch.