Severe enduring eating disporder
Project description
At Uppsala University Hospital, we are now conducting a research project aimed at increasing our knowledge of severe enduring eating disorder (SEED), why it develops, and how it can be treated. Several psychological, social and biological risk factors are suspected to increase the risk of a long-term course of the disease. In this research project, we will study these and other risk factors related to SEED with the aim of being able to influence them in the future and thus increase the chances of recovery. We will also evaluate a new psychological treatment for teenagers who have not recovered from standard treatment.
The research is conducted in both child and adolescent psychiatry and adult psychiatry.

Collaborative partners
The research is conducted in collaboration with Ata Ghaderi and Elisabeth Welch at Karolinska Institutet.
Sub-projects
Long-SEED
Long-SEED is a sub-study within the SEED research project where we want to follow people with an eating disorder diagnosis over a longer period of time. Patients are asked to participate after a new visit assessment at the eating disorder units at Uppsala University Hospital. Participants in the research project will fill out questionnaires about their symptoms, and about how the symptoms are experienced and what consequences they have, as well as about personality traits. We also collect some data from the medical record.

Emelie Collin
U-SEED
U-SEED is a follow-up of people who have developed a severe, enduring eating disorder and is a sub-study within the SEED research project, which aims to find out more about the factors that contribute to some people getting stuck in a severe and long-term eating disorder. The project also wants to investigate affected people's own thoughts about their illness, their experiences of eating disorder care and their wishes for change. We are recruiting adults who have had an eating disorder for at least seven years and who have undergone at least one treatment attempt for the eating disorder without recovery.
If you choose to take part in the project, you will be interviewed about your views on the care you have received so far and the care you would like to receive. You will also be asked questions about your eating disorder symptoms and how they have progressed. To get a good picture of what symptoms are present at the same time, all participants will undergo two more diagnostic interviews, answer questionnaires, and provide blood samples within the framework of the Uppsala Psychiatric Sample Collection (UPP). The purpose of the sampling is to investigate changes seen in increased inflammation in the body and to investigate hormonal changes related to starvation.
In total, it takes approximately four to six hours to participate in all parts of the study. Recruitment of participants started in spring 2024, and we plan to recruit 50 participants.

Hanna Spangenberg
U-SEED Register study
In a second part of U-SEED, a 15-year follow-up is made in national health registers of patients who sought care for eating disorders at Uppsala University Hospital between 2005-2007 and agreed to participate in a local quality register. In particular, the study intends to investigate the importance of personality syndrome for the further course and the risk of not recovering from the eating disorder.
RO-SEED
RO-SEED is a sub-study within the SEED research project that evaluates a psychological treatment for adolescents with eating disorder symptoms. The psychological treatment being tested is called RO-DBT and targets excessive and unhelpful self-control. The treatment has previously shown promise for adults. Adolescents with anorexia aged 14-19 who have not responded to previous treatment are offered assessment and then possible treatment. They participate by attending treatment and completing self-assessment forms before, during and after.

Pia Rosling
Uppsala Psychiatric Samples Collection (UPP)
UPP is an infrastructure for the collection of biological samples for research in psychiatry and child and adolescent psychiatry, such as blood and saliva. UPP is a separate sample collection within Uppsala Biobank.
As a patient and as a guardian of a minor patient, you are asked to submit samples to UPP, for later analysis of associations between bodily changes and mental symptoms. All research projects using samples from the UPP have been approved by the Ethics Review Authority and any analysis carried out must be in accordance with the written consent given by the sample provider. For participants in the Severe Persistent Eating Disorder (SEED) research project, samples are taken at the Eating Disorders Unit at Uppsala University Hospital. The analyses for biomarkers in severe persistent eating disorder primarily concern signs of increased inflammation, which could be a result of altered gut flora due to starvation.
Do you have questions about any of our studies?
Contact research nurse Anna Norrman Branth on 073-8682769 or email seed@uu.se.