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ANGI on the TV-news – Cynthia Bulik interviewed in Aktuellt

Photo: SVT
Photo: SVT

October 12th, 2015, the television news-show Aktuellt featured an interview with professor Cynthia Bulik about the ANGI-project. Bulik, who is the leading researcher in eating disorders and director of American ANGI, was interviewed at Karolinska Institutet in Stockholm.

Cynthia says that the disease anorexia nervosa has long been misunderstood, and that it is important for family members to understand the mechanisms of self-starvation.
– To suffer from anorexia is not a choice you make, it is a genetic disease. What few people know is that it is the psychiatric disorder that kills the largest number of people. More die from anorexia than from depression and schizophrenia. There are genes that load the gun, but environment that pulls the trigger.

Anorexia nervosa is a very serious type of eating disorder and those who suffer often have a distorted body image and starve themselves, sometimes to death. Aside from the medical complications arising from extreme malnutrition, suicide is the leading cause of death among patients. Many patients get health complications for life, like heart impact, organ failure and sepsis.

Social and biological causes

It was long believed that anorexia was due to socio-cultural reasons, such as family problems. Cynthia Bulik says that the disease until relatively recently has been misunderstood.
– It was believed that people opted for this disease because they want to be as slim as the models in the beauty industry. That is not true at all. Anorexia is not a choice. Thanks to twin studies, we know that anorexia is partially inheritable. So this means that 50 percent of the risk of developing the disease is due to genetic factors, which is the equivalent figure applying to other mental illnesses such as schizophrenia or bipolar disorder, says Cynthia Bulik.

Cynthia Bulik is described by medical experts in the field as the researcher with the absolute cutting edge knowledge in the world about anorexia.
The ANGI study brings together researchers in various fields and in several countries to try to investigate the disease with new eyes. They want to find out which genes make certain people at a higher risk of developing the disease than others. In Sweden, the ANGI study is lead by professor Mikael Landén.

Record-breaking research project

The ANGI study will collect blood samples from 13,000 men and women from Sweden, Denmark, USA, Australia and New Zealand who have, or have had, anorexia, and compare these with 13,000 blood samples from people who have never had the disease.

– Most of us feel miserable when we get hungry. If we miss lunch we will become acidic and irritated, and maybe get a headache. But people who are biologically prone to anorexia, they have the opposite response – their bodies respond paradoxically to hunger. They feel anxious and irritable at baseline, and when they go on that first diet, they find that the body feels calm. And that is what lures them into this prolonged starvation that is anorexia nervosa, says Cynthia Bulik in the interview.

– So far, we have no effective drugs to treat this disease, and this is because we do not yet understand the underlying biology. But this study may help us to crack the genetic code, so that we can turn these patients’ paradoxical experiences of calm when they starve themselves.

International research shows that about 1-2 per cent of girls and women between 13 and 30 suffer from the disease, and the figure is the same around the world. About 3-5 times as many suffer from other forms of eating disorders – that is about 6-10 percent overall. But the hidden statistics are large, and probably largest among boys and men, but in Sweden researchers estimate that about 100,000 girls and women aged 13-30 are suffering from some form of eating disorder, and about 15,000 boys and men. In 2014, 30 percent of all persons registered in the National Registry of Eating Disorder Treatment were under 18 years of age.
– Only one in four will completely recover from anorexia, and one in ten will die, so we have to find ways to get much better at treating this disease, Cynthia Bulik concludes.

See TV-clip here

By Ann-Sofie Lundin



UNC delegation visiting KI and the ANGI team

UNC visit

A delegation from the University of North Carolina (UNC) has visited Karolinska Institutet. Among other visits, they met with their Swedish colleagues in the ANGI project.

UNC is one of the universities involved in the ANGI study and coordinates the collection of samples in the United States. ANGI:s US lead investigator, Cynthia Bulik, who is stationed at both KI and UNC, hosted the visit.

By: Anders Juréus

Milestone reached for the ANGI project

In August 2015 the ANGI project reached a milestone in its collection, when a total of  2 500 individuals had completed the study. These 2 500 individuals have been recruited through the national quality register for eating disorders – Riksät. The 2 500 persons have, after completing a follow-up in the form of a web survey, been asked whether they want to participate in ANGI by handing in a blood test.

If the respondent accepted this, as a sampling kit was sent out and then the respondent handed the blood sample in to a hospital / health centre. Overall, out of about 3 700 individuals who were asked to participate , 2 500 have completed. Their blood samples are now  safely stored at the Karolinska Institutet Biobank.

By: Anders Juréus

ANGI to contact new study participants

ANGI will begin to contact study participants who have recently completed a follow-up in Riksät, in total about a few hundred people. Study participants will receive an information letter from the ANGI study and then be contacted by a research nurse.

In total, over 18 000 persons have been contacted to complete a follow-up in Riksät, and thus also broaden the ANGI base.

By: Anders Juréus

ANGI to recruit study participants at SCÄ

Huset SCÄ

In the autumn of 2015, ANGI actively begun recruiting study participants at the Stockholm Centre for Eating Disorders – SCÄ.

The patients visiting the clinic were either asked directly if they would like to participate, or were contacted by the staff of SCÄ.

SCÄ is situated on Wollmar Yxkullsgatan in Stockholm.

By: Anders Jureus

ANGI and Lifegene to collaborate

Logga lifegene

ANGI has started a collaboration with LifeGene to exchange biological and environmental data in order to try to understand why some people get an eating disorder.

LifeGene is a project that aims to provide knowledge about how our genes, our environment and the way we live affects our health. LifeGene and ANGI are both coordinated from the Department of Medical Epidemiology and Biostatistics (MEB) at Karolinska Institutet.

By: Anders Jureus

Collaboration between KI and Ipsos


Karolinska Institutet is since 2013 conducting a study on anorexia nervosa. The study is a collaboration between Swedish and foreign universities and is coordinated by Karolinska Institutet‘s Department of Medical Epidemiology and Biostatistics. Ipsos will assist the study with recruitment and interview of a 1 000 large reference group.

ANGI is an acronym that stands for Anorexia Nervosa Genetic Initiative and is an international collaboration with researchers from the US, Australia, Denmark and Sweden. The ANGI project is funded by the foundation Klarman Family Foundation, and is approved by the regional ethical review board in Stockholm. The study is coordinated by  Karolinska Institutet, the Department of Medical Epidemiology and Biostatistics.

Ipsos will, for the study’s behalf, recruit and interview a reference group of 1 000 individuals. The same reference group will also submit a blood sample. As part of the study additional data will also be collected about the individuals,  data from the national registers such as the Patient Register, the Medical Birth Register, the Population Register, the Education Register, the Conscription Register, the Medical Register and register with first-degree relatives registered.

Record data are needed to get as complete a picture as possible of the potential factors  – beyond the biological ones –  that may influence why people develop anorexia nervosa. It is the combined data from these national registers, quality registers RIKSÄT and Stepwise, and the blood samples that lays the foundation for the analysis, and hopefully may answer the question of what factors lie behind the disease anorexia nervosa.