Professor Bulik describes the origins of the AN25K Challenge
AN25K was born in Porto, Portugal at the 2012 meeting of the Eating Disorders Research Society. My husband (Patrick Sullivan) and I were both giving talks. He was talking about advances in the genetics of schizophrenia and showing slides with sample sizes of tens of thousands of participants. He was able to discuss concrete genetic findings that are game changers in understanding the underlying biology of schizophrenia. His slides showed how every year, the schizophrenia group seemed to add another several thousand or so samples to their total—each time increasing their ability to identify genes that are implicated in the disorder.
I got to follow his parade with a presentation about our 3,000 anorexia nervosa samples that yielded no significant findings. Our study, which spanned 20 countries and took years to coordinate, felt puny in comparison. Indeed, because of the small sample size, there was not enough statistical power to detect significant findings even if they were there.
All during his presentation, I was asking myself, "Why can't we do the same thing as schizophrenia, or bipolar disorder, or autism and get tens of thousands of cases?" As I was lost in my reverie, my dear husband challenged the audience in the room to get 25K anorexia nervosa cases. He said, "If you get the samples, Cindy will find the money to genotype them!" Gulp! My first response was, "Gee, thanks, dear!" My second response was, "I can do that!" Never one to back down from a challenge, I used that moment to light a fire under my own behind to mobilize our field to collaborate to reach 25K (or more!).
Since last October in Porto, the Klarman Family Foundation has funded an initiative (the Anorexia Nervosa Genetics Initiative or ANGI) that spans the United States, Australia, Sweden, and Denmark to collect 8,000 samples from individuals with current or past anorexia nervosa. Now, we are graced with Charlotte's Helix, which will add at least 1000 samples from the UK (and if the response to Charlotte's Helix is anything like the response to ANGI, I'll bet the UK will go far beyond 1000 samples).
I have been involved in quite a bit of research during my tenure in the field, but never have I seen such an outpouring of desire to participate. People want desperately to crack the code of anorexia nervosa. People who have suffered from the illness, or those who are still suffering, gladly roll up their sleeves for science with the hope of keeping others from ever having to experience what they went through.
I see a brilliant ray of hope in what is happening in the genetics of other disorders and my current mission is to bring eating disorders into the spotlight too. Not only will this work shed light on the genetics of anorexia nervosa, but by joining forces with researchers in the other disorders, we will be able to identify genes that cut across traditional diagnostic boundaries. We all know that anorexia nervosa often goes hand in hand with depression and anxiety, for example. Now we'll have the tools and the samples to see whether some of the same genes might be responsible for these disorders being common bedfellows.
I express my deepest respect and gratitude to Charlotte for creating the Helix. It will allow thousands of individuals in the UK to join this global effort to decode this disorder. We will not let her down.
Given the way that the ethics of genetic studies work, you do need to be in the country doing the studies in order to donate a sample. Charotte's Helix will allow for participation across the UK. If you came upon this site from within the US, you can participate in ANGI by following this link. If you came upon us from Australia, you can participate here. If you are from a different country and want to start your own effort to contribute, please contact me (firstname.lastname@example.org) and I'll see what I can do to help. After all, I made that promise in Porto, and I intend to keep it!
Cynthia Bulik, PhD, FAED
Distinguished Professor of Eating Disorders
University of North Carolina at Chapel Hill