Interdisciplinary Care and Systemic Therapy in von Hippel–Lindau Disease – A Prospective Single-Center Observational Study on the Clinical Use of Belzutifan at Ulm University Hospital

Interdisciplinary Care and Systemic Therapy in von Hippel–Lindau Disease – A Prospective Single-Center Observational Study on the Clinical Use of Belzutifan at Ulm University Hospital - BELIEVE-VHL

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00039735

Enrollment

Registered

2026-06-11

Start date

2026-06-15

Completion date

Unknown

Last updated

2026-06-22

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

892

Interventions

Group 1: systemic therapy with Belzutifan Study-related assessments: -MRI-based tumor assessment (every 2–3 months) using whole-body MRI -Laboratory tests (hematological, renal, hepatic), including bl

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: • Genetically confirmed diagnosis of von Hippel–Lindau (VHL) disease or presence of tumors characteristic of the syndrome (with or without a positive family history of VHL) • Written informed consent for study participation provided by the patient

Exclusion criteria

Exclusion criteria: • Inability to adequately understand the patient information • Inability to attend study visits • Contraindications to MRI

Design outcomes

Primary

Measure	Time frame
- Objective response rate (ORR), defined as the proportion of patients achieving complete or partial remission, according to RECIST criteria - Every year and at study termination - Whole-body MRI, evaluation according to RECIST criteria	—

Secondary

Measure	Time frame
Laboratory, clinical, and neuropsychological parameters, quality of life, pain assessment, therapy side effects, therapy safety	—

Countries

Germany

Contacts

Public ContactMona Laible

Universitätsklinikum Ulm Neurologische Klinik

mona.laible@uniklinik-ulm.de+49 731 177 5395

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Jun 29, 2026