What is ANGI?
The Anorexia Nervosa Genetics Initiative (ANGI) is the largest and most rigorous genetic investigation of eating disorders ever conducted. Researchers in the United States, Sweden, Australia and New Zealand, and Denmark are collecting clinical information and blood samples from individuals with anorexia nervosa and individuals without an eating disorder.
ANGI represents a global effort to detect genetic variation that contributes to the potentially life-threatening illness anorexia nervosa. The goal of the research study is to transform our knowledge about the causes of eating disorders to work toward greater understanding and ultimately a cure. If you have suffered from anorexia nervosa at any point in your life, you can help us achieve this goal. If you have never had an eating disorder, but still want to contribute, we invite your participation as well.
What does it mean to participate in ANGI?
After you have answered the survey, you may be contacted by one of our research nurses who will give you the opportunity to ask questions about the study. If you then choose to participate further, you go on to have a blood test taken at your nearest clinic. Participation is voluntary and you may decline participation without it affecting your treatment.
How is the ANGI research carried out?
If you choose to participate, you will get to answer a questionnaire and in some cases donate a blood sample. In addition to this, we will collect information from national registries such as the National Patient Register, the Medical Birth Register, the population register, Education register, Conscription Register, drug registry, and registers with first-degree relatives. Register data are needed to get as complete a picture as possible of the factors that may influence why people get anorexia nervosa. The combination of all of these data– from national registries, quality registers RIKSÄT and Stepwise and the blood sample –forms the foundation for the analysis, and will allow answer to the question of what the factors are that underlie anorexia nervosa.
What happens to your donated blood sample?
Your donated blood sample will be stored at KI Biobank at Karolinska Institutet. The samples will receive unique codes so that they cannot be mixed up or identified by unauthorized persons. Your personal information in KI Biobank is very secure and cannot be accessed by unauthorized persons. Your donated blood sample will be used to analyze the set of substances found in your blood and your genetic makeup.
Who is responsible for personal data?
Karolinska Institutet is responsible for this. The ANGI study has been approved by the Ethical Review Board. (No. 2013 / 112-31 / 2, No. 2014/1563, No. 2015 / 746-32, Dnr2015 / 693-32, No. 2015 / 932-32, No. 2015 / 982-32.
Is ANGI only interested in those who suffer from anorexia nervosa?
We are also interested in other eating disorders such as bulimia nervosa, purging disorder, and binge-eating disorder. We also need control participants, i.e. people who have never had an eating disorder so that we can compare the genetic material from people with eating disorders to those without eating disorders to see where the critical differences lie. So, everyone can contribute to the research by completing the ANGI survey.
Why is a research study on anorexia nervosa important?
Anorexia nervosa is a disorder characterized by low body weight, fear of weight gain, and a seeming indifference to the disease. Anorexia nervosa occurs in about 1% of the population, and affects females and males of all ages. Our understanding of why some people get anorexia is incomplete, which hinders the development of effective treatment, diagnosis, and prevention. In the ANGI study, we are aiming to discover what the underlying biological and environmental factors that cause anorexia nervosa are. The results of this research will increase our understanding of the disease and ultimately lead to more effective treatments and improved diagnostics.
How can I keep myself updated with the ANGI research progress?
How is ANGI doing right now?
The collection of blood samples in ANGI has been continuously successful, and in the summer of 2015 approximately 2 500 individuals, who have ever had an eating disorder, contributed with a blood sample to the ANGI study in Sweden. This spring we also started recruiting healthy controls. The controls are matched on age and sex with those who have had an eating disorder. So far, over 1,300 control individuals have agreed to participate. In the autumn of 2015, we have started to recruit participants at some eating disorders clinics, and from the general public. Our goal is to give everyone in Sweden who has ever had anorexia nervosa the opportunity to participate in ANGI.
The ANGI team wants to express a big THANK YOU to everyone who has been involved in our study thus far, whether it be through participating in the study or passing on the word. We could not do it without all of you! We are deeply grateful for your interest and participation!