An observational study in Eating Disorders, Anorexia Nervosa and Bulimia Nervosa, sponsored by Uppsala University Hospital. Recruiting at 1 site in Sweden. Open to participants aged 14 Years and older. Per ClinicalTrials.gov, last updated 2024-12-31.
Sponsored by Uppsala University Hospital · Observational
Among 22 studies in Feeding and Eating Disorders with a site in Sweden — 10 open to participants now, 11 under way, none of them phase 3. Feeding and Eating Disorders · Sweden.
Among the 22 studies in Feeding and Eating Disorders with a site in Sweden, this one is the 2nd largest by planned enrollment of the 10 observational ones that give a count, is one of 3 that started in 2024, is one of 10 observational ones, reaches primary completion later than 8 of the 10 other live ones, and was the 15th registered.
645 studies on the registry are indexed under Feeding and Eating Disorders; 153 are open to participants now.
Browse Feeding and Eating Disorders studies →10 of the 22 studies in Feeding and Eating Disorders with a site in Sweden are open now. Recruiting first, the newest first:
Karolinska Institutet · Sites in Sweden
Ages 18+
Karolinska Institutet · Sites in Sweden
Ages 12–17
Karolinska Institutet · Sites in Sweden
Ages 13+
Uppsala University Hospital · Sites in Sweden
Ages 14–19
Region Örebro County · Sites in Sweden
Ages 11–17
A study can be open while its sites in Sweden have not opened yet or have stopped. Only those recruiting at a site in Sweden →
Of the 101 Feeding and Eating Disorders studies recruiting now, 31 (31%) set no upper age limit and 68 (67%) stop at 75 or younger; 46 take children under 18; 21 take healthy volunteers.
This study: 14 Years and older · all sexes · no healthy volunteers.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
22 studies; the count open now beside each. This study's row is marked.
First in 2004; this study’s year is marked. 3 started in 2024.
This study's planned enrollment of 800 is above the median of 102 across 177 observational studies indexed under Feeding and Eating Disorders.
Median enrollment 50 across the 12 interventional studies, 200 across the 10 observational. Of the 9 that completed or were terminated, 0 (0%) have results posted.
This tab as a report to print or save as PDF → With an account.
1 of 22 have an industry lead sponsor. The 10 most frequent:
Uppsala University Hospital is the lead sponsor of 73 studies on the registry; 19 are open to participants now.
Uppsala University Hospital has 3 studies filed under Feeding and Eating Disorders — fewer than ten, so there is no comparison to draw.
4 of the studies in Feeding and Eating Disorders with a site in Sweden that are under way reach primary completion within a year, 0 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT07016334Karolinska InstitutetWe Analyse Metabolites in Dried Blood Spots From Newborns That Later in Life Developed an Eating Disorder. | 2026-12 |
| NCT06792071Uppsala University HospitalEvaluation of Radically Open Dialectical Behavior Therapy for Youth At Risk for Developing Severe and Enduring Eating Disorders | 2026-12 |
| NCT05703789Karolinska InstitutetOral Health in Patients With Severe Eating Disorders | 2026-12-15 |
| NCT05863598Karolinska InstitutetPrevention of Eating Disorders Through Optimization of Protective Factors | 2027-07-31 |
Among the 22 studies in Feeding and Eating Disorders with a site in Sweden, from their registry updates:
This tab as a report to print or save as PDF → With an account.
The goal of this observational longitudinal study is to investigate characteristics and factors associated with the development of Severe and Enduring Eating Disorders (SEED). In this project, the researchers will follow two prospective cohorts of patients with eating disorders (ED), one adolescent (ages 14-17) and one adult (ages 18+), in terms of change in and impact of clinical, psychological, and biological risk factors.
Data will be collected at baseline, after treatment, two years after baseline, and thereafter five, 10 and 20 years after baseline. Participants will be asked to undergo a physical examination, leave blood samples, be interviewed, and fill in questionnaires. If the participants are minors, their care takers will also fill in the questionnaires.
The study aims to explore how clinical, psychological, and biological risk factors-including comorbidity, personality characteristics, difficulties with emotion regulation (ER), cognitive inflexibility, loneliness, severe ED symptoms, and inflammatory activation-contribute to a chronic course of the disorder.
BACKGROUND, AIMS AND HYPOTHESES
Eating disorders (EDs) are psychiatric conditions characterized by a loss of control over food intake. The prevalence of anorexia nervosa (AN) is estimated at approximately 1-2%, while bulimia nervosa (BN) affects 2-3% of the population. EDs significantly impair functioning, have serious health consequences, and are associated with high mortality rates. Around 20% of patients with AN and 10% of those with BN develop a long-lasting illness, often referred to as Severe and Enduring Eating Disorders (SEED). While there is no scientific consensus on the definition of SEED, it is frequently defined as a duration of illness lasting seven years or more. Research suggests that factors maintaining EDs may differ from those that trigger them.
The underlying causes of EDs remain largely unknown, though their origins are considered multifactorial. Psychiatric comorbidities are highly prevalent in EDs, significantly influencing their course and outcomes. Personality disorders (PDs) are associated with poorer treatment outcomes for EDs, but longitudinal studies examining the trajectory of PDs in EDs are limited, and findings are inconsistent.
Dysfunctional emotion regulation (ER) has been identified as a transdiagnostic psychological risk factor for many psychiatric disorders, including EDs. ER difficulties can manifest as undercontrol, characterized by personality traits such as impulsivity and insufficient self-control, or overcontrol, characterized by emotional inhibition and excessive self-control och cognitive inflexibility. Some models propose that undercontrol is central to BN, while overcontrol are core features of AN. However, the course and stability of ER in EDs remain poorly understood due to a lack of longitudinal studies.
Another understudied factor in EDs is loneliness, encompassing perceived social isolation and a lack of connectedness. Loneliness has been linked to ER strategies, such as excessive self-control and emotional avoidance, which in youth can contribute to social isolation, reduced life satisfaction, and a higher risk of enduring mental health problems. The role of loneliness in SEED, however, is not well understood.
Further, research on EDs has proposed that biological factors, including dysregulation of the immune system, plays a role in the development and maintenance of the EDs. Studies indicate a pro-inflammatory state in AN, though it remains unclear whether this is a state or trait marker. The role of inflammation in BN is even less understood, and studies present mixed findings. Some evidence suggests an increased risk of BN in individuals with autoimmune or inflammatory diseases, highlighting the need for further investigation into inflammatory markers over the course of the illness.
In summary, clinical factors such as psychiatric comorbidity and personality disorders; psychological factors including personality characteristics, dysfunctional emotion regulation, overcontrol/undercontrol, cognitive inflexibility, loneliness, and severe eating disorder (ED) symptoms; and biological factors such as immune system dysregulation may all play a role in the development, maintenance, and relapse of EDs. However, research in this field is scarce.
This projects aims is to increase our knowledge about risk factors for a severe course in EDs. Our overarching research question is: What are the key clinical, psychological, and biological risk factors of a severe and enduring course of an eating disorder?
It is hypothesized that a chronic course of ED is related to severe ED symptoms, personality traits related to maladaptive over- and undercontrol, difficulties with emotion regulation (ER), and increased systemic inflammation.
Primary outcomes are
Secondary outcomes are
Predictors, moderators and mediators
PROCEDURE
Two prospective cohorts of patients with eating disorders (EDs)-one adolescent and one adult-will be followed longitudinally to examine changes in and the impact of clinical factors, personality traits, emotion regulation (ER) difficulties, loneliness, and biomarkers. Data will be collected at baseline, post-treatment, two years post-baseline, and at five, 10, and 20 years. Participants will be recruited consecutively from autumn 2024 onwards from the Eating Disorder Unit at the Uppsala Department of Child and Adolescent Psychiatry (ED-CAP) and the eating disorder unit for adults (ED-P).
Child and adolescent psychiatry (ED-CAP)
The eating disorder unit at the Department of Child and Adolescent Psychiatry at Uppsala University Hospital (CAP) treats patients with AN, BN, Other Specified Feeding or Eating Disorder (OSFED), and Avoidant Restrictive Food Intake Disorder (ARFID) up to 18 years. Patients are referred to the unit either by other healthcare professionals or by themselves and/or their parents.
All patients are systematically assessed using a structure implemented by Swedish ED clinics that provides valid data to the national quality register. The structure consists of an assessment of clinical history, diagnostic evaluation with the child and adolescent version of the MINI International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) or Electronic Psychiatric Screening Interview for children (EPSI-C), the Eating Disorder Examination interview (EDE-I), and clinician rating of symptoms and functioning (C-GAS) and the Clinical Global Impressions scale (CGI). In addition, weight and height are measured, and self-ratings with the Eating Disorder Examination Questionnaire (EDE-Q), Clinical Impairment Assessment Questionnaire (CIA), and Montgomery-Åsberg Depression Rating Scale Self-Assessment (MADRS-S) are collected.
After this initial assessment, all patients will be invited to participate in research. A research nurse will invite all patients and perform the initial somatic examination as well as sampling of blood. The patients who accept participation will sign informed consent to be included in the study. Since the youths are at least 14 years old, their parents/caregivers will also be required to accept participation and sign informed consent. Participants will receive questionnaires sent to them digitally.
The eating disorder clinic for adults (ED-P)
The eating disorder clinic for adults at the Department of Psychiatry at Uppsala University Hospital (ED-P) treats adults (≥ 18 years) with EDs. The clinic receives referrals from healthcare professionals (mainly physicians or psychologists) from other parts of the regional healthcare system. Patients can also refer themselves.
All patients undergo a systematic evaluation upon arrival at the eating disorder clinic. This consists of a clinical history and a structured diagnostic interview; either the MINI for DSM-5 or the Structured Clinical Interview for DSM-5 Axis I Disorders - Clinical Version (SCID-I CV). Patients also undergo the Eating Disorder Examination interview (EDE-I) and complete the self-report instruments Eating Disorder Examination Questionnaire (EDE-Q), Clinical Impairment Assessment Questionnaire (CIA), and Montgomery-Åsberg Depression Rating Scale Self-assessment (MADRS-S). Weight and height are measured.
All diagnostic assessments at the Department of Psychiatry are conducted by psychologists or physicians who have received training in the procedure. Patients who, during the assessment, are diagnosed with AN, BN, BED, ARFID, or OSFED of moderate to severe intensity, or OSFED with psychiatric comorbidity, and who accept treatment are accepted for treatment at P-ED. Patients who are diagnosed with mild OSFED or moderate OSFED without psychiatric comorbidity are referred to primary care for monitoring or treatment.
After this initial assessment, all patients will be invited to participate in research. An appointed person will invite all patients. If the patient accepts participation, they will sign an informed consent form. Participants will receive questionnaires sent to them digitally.
All Ages: Both ED-CAP and ED-P Participants will be asked about the collection of biomarkers through Uppsala Psychiatric Patient samples (UPP) (ethics approval Dnr 2012/081), which is an infrastructure for the collection of biological materials at the Department of Psychiatry at Uppsala University Hospital. All patients will be invited to participate in UPP, and inflammatory markers will be analyzed in accordance with the informed consent for UPP. Inflammatory markers will be analyzed from venous blood samples drawn from participants before treatment, immediately after treatment or dropout, and at the two-year follow-up.
At baseline, the following data will be collected: Diagnoses, physical examination (BMI, pulse, blood pressure), demographic characteristics, clinical characteristics, personality traits, psychological risk factors (e.g., ER difficulties, including loneliness), and biomarkers (including markers of inflammation). The same procedure will be repeated again after two years. A few questionnaires will be distributed at treatment termination or dropout.
After five, 10, and 20 years, patients will be followed up through National Helath registers and with questionnaires. Weighing will be performed weekly during treatment and at the follow-up two years later. At all time points, questionnaires will be distributed digitally. Process measures, such as the type of received treatment, number of treatment sessions, whether the patient dropped out or completed treatment, will be monitored. At follow-up, participants will be asked to answer a set of questions regarding, for example, living conditions, in addition to the questionnaires assessed at baseline.
QUALITY ASSURANCE PLAN
Interviewers will be trained and quality assured by calculating inter-rater agreement. For self-assessment, well established psychometrically evaluated instruments have been chosen. Special consideration has been given to selecting instruments suitable for both adolescents and adults.
SAMPLE SIZE ASSESSMENT
Sample size calculations were performed to ensure adequate power for the proposed analyses. With a Cohens effect size of d = 0.2, 199 participants will be required in each group, given an alpha of 0.05 and a power of 0.8. Dropout over time is expected, which increases as more time passes, estimating a 50% dropout by the final physical follow-up. Therefore, just under 400 participants need to be included in each group in order to have sufficient data for the last follow-up.
DATA ANALYSES
A range of statistical techniques will be employed to address the hypotheses and research aims, considering the longitudinal design, comparisons between the adolescent and adult cohorts, and diversity of outcome variables:
Descriptive analyses - Descriptive statistics (means, standard deviations, proportions) will summarize demographic, clinical, psychological, and biological variables at baseline and follow-up. Correlation analyses will explore relationships between predictors and primary and secondary outcomes.
Comparisons between subgroups
Longitudinal Regression Analyses
Mediation and Moderation Analyses
Survival Analysis
Inflammatory Biomarker Analyses
Missing data will be addressed as instructed for each instrument, ur by using multiple imputation or mixed-model approaches.
Subgroup Analyses
All statistical analyses will be performed using appropriate software (R, SPSS), and sensitivity analyses will be conducted to assess the robustness of findings.
Two prospective cohorts of patients with ED, one adolescent and one adult, will be followed in terms of change in and impact of clinical factors, personality style, ER difficulties, loneliness, and biomarkers from baseline, after treatment, two years after baseline, and after five, 10 and 20 years. These cohorts will be consecutively recruited from 2024 onwards from the Eating Disorder Unit at the Uppsala Department of Child and Adolescent Psychiatry (CAP), from 14 to17 years of age, and the Uppsala Department of Psychiatry (P), from 18 years of age.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Eating disorder examination interview (EDE-I)
EDE-I is a semi-structured interview for assessing symptoms of and diagnosing eating disorders, including providing information for grading severity according to e.g., the DSM 5. The EDE-I assesses a variety of eating disorder behaviors, weight control behaviors, and behavioral and cognitive features of eating disorder psychopathology.
Time frame: At baseline and at two-year follow up
Eating disorder Examination Questionnaire (EDE-Q)
EDE-Q is a 28-item self-report questionnaire, designed to assess the range, frequency and severity of behaviors associated with an eating disorder. It is categorized into four sub-scales: Restraint, Eating Concern, Shape Concern and Weight Concern, and an overall global score. The score is obtained by calculating the mean for the total score and the subscales respectively (min = 0, max =6), higher scores indicate more severe eating disorder symptoms.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Eating Disorder-15 (ED-15) and for parents/caregivers (ED-15-P)
ED-15 assesses eating disorder attitudes and behaviors on a 15-item Likert scale, which includes 10 attitudinal items (scored from 0-6) and 5 items for frequency grading. ED-15-P include the same items but is answered by the youths caregiver instead. The ED-15 includes two attitudinal subscales: Weight \& shape concerns and Eating concerns. The Overall attitudinal score is the mean of the scores on all ten items. Higher scores indicate more severe eating disorder symptoms.
Time frame: ED-15 at baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up (youth cohort only). ED-15-P At baseline, follow-up after treatment, and at 2 years follow-up.
Clinical Global Impression-Severity (CGI-S)
Global clinical rating of symptom severity on an 8-grade Likert scale (scored between 0-7). The CGI offers a clinician-determined summary that incorporates all available information, including the patient's history, psychosocial context, symptoms, behavior, and the impact of these symptoms on their functional ability. A higher score indicates a more severe psychopathology.
Time frame: At baseline and at 2 year follow-up (youth cohort only).
Eating disorder diagnosis during follow-up in registers
Eating disorder diagnosis (AN, BN, BED, EDNOS, OSFED, UFED), collected from the National registries held by the National Board of Health and Welfare.
Time frame: Registry data is retrieved at follow-up 5, 10 and 20 years
Clinical Impairment Assessment questionnaire (CIA)
The CIA is a 16-item self-report measure of the severity of psychosocial impairment due to eating disorder features, Each item is rated on a four-point Likert scale ranging from 'Not at all' to 'A lot'. The minimun score is zero and the maximum score is 48, with higher scores indicating a more severe impairment.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
WHO Disability Assessment Schedule (WHODAS 2.0)
WHODAS 2.0 measure individual dysfunction in six domains of daily activities (cognition, mobility, self-care, relationships with people, life activities, and participation). It is measured on a five-point Likert scale ranging from no difficulty, to extreme difficulty. The score is calculated by dividing the total score with the number of items, resulting in a minimum score of zero and maximum score of 4. Higher scores indicate higher disability.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up (adult cohort only).
Uppsala scale of Functional Impairment in Daily life (UFID and UFID-P for parents)
The UFID is a Five-item, five-point Likert scale that measures functional impairment in daily life on a score between 1-5. UFID-P includes the same items but is answered by the caregiver instead. Higher scores indicate more functional impairment.
Time frame: UFID: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up (youth cohort only). UFID-P: At baseline, follow-up after treatment, and at 2 year follow-up.
Children's Global Assessment Scale (CGAS)
CGAS is a rating of general functioning for children and young people aged 4-16 years old. The clinician assesses a range of aspects of psychological and social functioning and gives the child or young person a single score between 1 and 100, based on their lowest level of functioning.
Time frame: At baseline and at 2 year follow-up (youth cohort only).
EQ-Visual Analogue Scale (EQ-VAS)
The EQ-VAS is a vertical visual analogue scale that takes values between 100 (best imaginable health) and 0 (worst imaginable health), on which patients provide a global assessment of their health.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Social safeness and pleasure scale (SSPS)
The SSPS is an 11-item self-rating instrument that assesses the extent to which people experience their world as safe, warm, and soothing, and how connected they feel to others. Participants indicate their answers on a five-point Likert scale, ranging from 1 (almost never) to 5 (almost all the time). Scores are added together to produce a total score in the range of 11-55, with higher scores representing higher perceived social safeness and connectedness to others. SSPS at baseline is a predictor/mediator/moderator, SSPS at follow-up is a secondary outcome.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Loneliness scale
The Loneliness scale is an 11-item self-rating instrument includes a 6-item emotional subscale and a 5-item social subscale. Respondents are presented with a series of statements and asked to indicate the extent to which the statement applies to their situation on a four-point Likert scale. The total score can range between 0-11 with higher scores indicating greater feelings of loneliness. The Loneliness scale at baseline is a predictor/mediator/moderator, The Loneliness scale at follow-up is a secondary outcome.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
UCLA Loneliness Scale
UCLA Loneliness scale is a self-rating scale designed to measure ones subjective feelings of loneliness as well as feelings of social isolation. The scale comprises three questions that measure three dimensions of loneliness: relational connectedness, social connectedness and self-perceived isolation. Participants indicate their answers on a four-point Likert scale, providing a total score between 4-16, with higher scores indicating greater feelings of loneliness. The UCLA at baseline is a predictor/mediator/moderator, The UCLA at follow-up is a secondary outcome.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Montgomery Åsberg Depression Scale Self-assessment (MADRS-S)
MADRS-S is a 9-item widely used self-rating measure of depressive severity. The intention of the scale is to give an image of the patients current state of mind. The patient grades how he/she felt during the last three days. Items are rated on a seven-point Likert scale, providing a total score between 0-54, with higher scores reflecting greater depression severity. The MADRS-S at baseline is a predictor/mediator/moderator, The MADRS-S at follow-up is a secondary outcome.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Comorbidity
Comorbidity (including e.g., mood disorders, anxiety disorders, substance use disorders, and psychotic disorders) will be assess from medical journals, where diagnoses are based om the semi-structured interviews Electronic Psychiatric Screening Interview for children (EPSI-C), The Mini-International Neuropsychiatric Interview (M.I.N.I) for DSM-5 or the Structured Clinical Interview for DSM-5 Axis I Disorders - Clinical Version (SCID-I CV). Comorbidity will also be assessed from national health registers. Comorbidity at baseline is a predictor/mediator/moderator, comorbidity at follow-up is a secondary outcome.
Time frame: At baseline, after treatment, and at 2 year follow-up (from medical journals) and at 10 and 20 years follow-up (from national health registers)..
Descriptive information about psychosocial functioning
Occupation status
Time frame: Self-rated at baseline and at 2, 5, 10, and 20 years follow-up. Registry data is retrieved at follow-up 5, 10 and 20 years
Descriptive information about psychosocial functioning
Level of education
Time frame: Self-rated at baseline and at 2, 5, 10, and 20 years follow-up. Registry data is retrieved at follow-up 5, 10 and 20 years
Descriptive information about psychosocial functioning
Sick-leave
Time frame: Self-rated at baseline and at 2, 5, 10, and 20 years follow-up. Registry data is retrieved at follow-up 5, 10 and 20 years
Descriptive information about psychosocial functioning
Civil-status
Time frame: Self-rated at baseline and at 2, 5, 10, and 20 years follow-up. Registry data is retrieved at follow-up 5, 10 and 20 years
Descriptive information about psychosocial functioning
Number of children
Time frame: Registry data is retrieved at follow-up 5, 10 and 20 years
Physical status - BMI
Weight and height will be combined to report BMI in kg/m\^2, assessed with a valid and reliable device in a standardized procedure. BMI at baseline is a predictor/mediator/moderator, BMI at follow-up is a secondary outcome.
Time frame: At baseline, weekly during treatment, follow-up after treatment, and at 2 year follow-up. Self-rated att 5, 10, and 20 year follow-up.
Physical status - pulse
The number of times the heart beats within a certain time period. Pulse at baseline is a predictor/mediator/moderator, Pulse at follow-up is a secondary outcome.
Time frame: At baseline, and at 2 year follow-up.
Physical status - blood pressure
Blood pressure at baseline is a predictor/mediator/moderator, blood pressure at follow-up is a secondary outcome.
Time frame: At baseline, and at 2 year follow-up.
The Avoidance and Fusion Questionnaire for Youth (AFQ-Y)
The AFQ-Y is a self-rating instrument that measures psychological inflexibility. Participants rate their level of agreement on eight items on a 5-point Likert measuring one single factor. Score range is 0-24 and higher scores indicate a higher level of psychological inflexibility.
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Emotion Regulation Questionnaire (ERQ)
The ERQ is a self-rating instrument designed to assess individual differences in the use of emotion regulation strategies. It is composed of ten items divided into two factors: cognitive reappraisal and expressive suppression. Participants indicate their answers on a 7-point Likert-scale ranging from 1 (total disagreement) to 7 (total agreement).
Time frame: At baseline, follow-up after treatment, and at 2, 5, 10, and 20 years follow-up.
Swedish universities Scale of Personality (SSP)
SSP is a self-report instrument assessing personality traits corresponding to biological correlates. It contains 91 items divided into 13 subscales. The scale can also be divided into a three-factor solution with Factor 1 reflecting Neuroticism; Factor 2 reflecting Aggressiveness; and Factor 3 reflecting Extraversion. Each item is given as a statement with a four-point response format, ranging from does not apply at all to applies completely. It is presented in standardized t-score ranging from 0-100 (mean 50 and standard deviation 10). Higher scorer indicate more pronounced characteristics of that specific trait.
Time frame: At baseline and at 2, 5, 10, and 20 years follow-up (adult cohort only).
Neuroticism-Extraversion-Openness Personality Inventory (NEO-PI)
The NEO-PI is a self-report instrument designed to assess personality traits based on the Five-Factor Model of personality. It consists of 240 items grouped into five main domains: Neuroticism, Extraversion, Openness to Experience, Agreeableness, and Conscientiousness. Each domain is further divided into six specific facets, providing a detailed profile of personality traits. Responses are rated on a five-point Likert scale, ranging from "Strongly Disagree" to "Strongly Agree." Scores are typically presented as standardized T-scores, with higher scores indicating a stronger expression of the respective traits.
Time frame: At baseline, and at 2, 5, 10, and 20 years follow-up (youth cohort only)
Ego Undercontrol Scale-13 (EUC-13)
EUC-13 is a 13 item self-rating instrument designed to assess personality types based on how people inhibit or express their emotional impulses, identifying over- and undercontrolled personality styles. It is answered on a four-point Likert-scale ranging from Disagree very strongly to Agree very strongly. The total score can range between 1-4, with higher scores indicating higher undercontrol and lower scores indicating higher overcontrol.
Time frame: At baseline and at 2, 5, 10, and 20 years follow-up
Ghrelin
Ghrelin will be analysed from blood samples. A solid phase sandwich enzyme linked immunosorbent assay (ELISA) (Mercodia AB, Uppsala, Sweden) will be used for the analyses.
Time frame: At baseline and at 2 year follow-up
Leptin
Leptin will be analysed from blood samples. A solid phase sandwich enzyme linked immunosorbent assay (ELISA) (Mercodia AB, Uppsala, Sweden) will be used for the analyses
Time frame: At baseline and at 2 year follow-up
Adinopectin
Adinopectin will be analysed from blood samples. A solid phase sandwich enzyme linked immunosorbent assay (ELISA) (Mercodia AB, Uppsala, Sweden) will be used for the analyses.
Time frame: At baseline and at 2 year follow-up
Inflammatory markers
Inflammatory markers will be analysed from blood samples. A panel of 100 different markers, will be anlyzed using an electrochemilumine-scence sandwich immunoassay, Meso Scale Discovery (K15049D and K15198D, Rockville, MD, USA) a multiplex platform.
Time frame: At baseline and at 2 year follow-up
Duration of illness
How long the participant has had the eating disorder.
Time frame: Duration of illness will be assessed via baseline data where the participant reports how old he/she was when the eating disorder began (baseline), as well as time passed from baseline (follow-up).
Time in treatment
Time spent in eating disorder treatment
Time frame: This information will be gathered from self-reports (previous treatments) and patient journals (current treatment).
Care utilization
Days in hospital since baseline
Time frame: Registry data is retrieved at follow-up 5, 10 and 20 years
Care utilization
Received somatic and psychiatric care
Time frame: Registry data is retrieved at follow-up 5, 10 and 20 years
Treatment completion/treatment droput
Data from medical journals will be reviewed to determine whether the treatment was completed as planned, prematurely terminated by the clinician's decision, or discontinued by the patient's decision.
Time frame: After treatment
Motivation for change
Participants are instructed to describe their goals for the eating disorder treatment they have sought. This description will be analyzed categorized in terms of motivation and compared to treatment outcomes and including completion or dropout from treatment.
Time frame: At baseline
Plan to share: No — Data will not be made publicly available due to confidentiality, but can be made available upon reasonable request to the corresponding author.
Started Sep 2024 (actual). Primary completion is estimated for Dec 2029, 63 months after the start.
Of 61 non-industry observational studies under Feeding and Eating Disorders, half reached primary completion within 42 months of starting (the median), counting those still running; a quarter within 19 and three quarters within 95. This study's planned 63 months is above that.
Counting every sponsor, half of 64 studies reached it within 42 months; a quarter within 18 and three quarters within 95.
How these figures are worked out, and which studies are left out of them.
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