The Effect of GLP1 Agonists on Weight Loss in BBS Cohort in the UK

NCT07602803 | Completed

• 1 other identifier: BBSGLP1
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this observational study is to learn about the long-term effects of GLP1 agonists (weight loss jab, including Mounjaro) in patients with Bardet-Biedl Syndrome (BBS) who take GLP1 agonists to treat high body weight. The main question: Do GLP1 agonists effectively and safely lower body weight in patients with BBS when taken long-term, compared to patients not on these medications? The investigators look at the change (%) in weight during the observational periods.

Conditions

Bardet-Biedl Syndrome

Keywords

GLP1 agonist; Weight Loss; Obesity

Outcome Measures

Primary Outcomes (1)

• Weight loss change (%) at the end of study date, compared to one at the time zero

  Change (%) of Body weight (kg) from BW at the start date of this study and BW at the end of study date

  From enrolment to the end of treatment at the end of study date up to 18 months

Study Arms (1)

Adult patients with diagnosis of BBS in national centre in the UK (London and Birmingham)

Intervention arm (BMI\>30): patients with BBS treated with GLP1 agonists Control arm (BMI\>30): patients with BBS without GLP1 agonists

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

All the patients with a genetic diagnosis of BBS living in the UK under the UK National BBS Centres (Birmingham and London).

You may qualify if:

• All the adult patients with a genetic diagnosis of BBS under the national BBS centres (London and Birmingham in the UK).

You may not qualify if:

• Adult patients with a genetic diagnosis of BBS under the national BBS centres (London and Birmingham in the UK) who lost follow ups or significant missing data, or BMI\<30 in patients without GLP1 agonists.

Sponsors & Collaborators

• The Queen Elizabeth Hospital: lead

Study Sites (1)

Queen Elizabeth Hospital Birmingham

Birmingham, West Midlands, B15 2GW, United Kingdom

Location

Related Publications (1)

• Yuki Heath, Jeremy Tomlinson, Lukas Foggensteiner

  RESULT

MeSH Terms

Conditions

Bardet-Biedl Syndrome; Weight Loss; Obesity

Condition Hierarchy (Ancestors)

Hypothalamic Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Retinitis Pigmentosa; Eye Diseases, Hereditary; Eye Diseases; Ciliopathies; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genetic Diseases, Inborn; Body Weight Changes; Body Weight; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Overweight; Overnutrition; Nutrition Disorders; Nutritional and Metabolic Diseases

Study Officials

• Jeremy Tomlinson, Professor

  University Hospital Birmingham NHS Foundation Trust

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Specialty Doctor in Renal Medicine

Study Record Dates

• First Submitted: May 15, 2026
• First Posted: May 22, 2026
• Study Start: January 1, 2023
• Primary Completion: April 1, 2026
• Study Completion: April 22, 2026
• Last Updated: May 27, 2026

Record last verified: 2026-05

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, SAP
• Time Frame: Beginning right after publication with no end date
• Access Criteria: a data sharing agreement must be signed, and those documents can be submitted via emails.

Locations

GB (1)