International Wilson's Disease Patient Registry (iWilson Registry)

Status: Recruiting
Location: See all (16) locations...
Study Type: Observational
SUMMARY

Longitudinal, observational, non-interventional, standard of care Registry. Data will be collected from the routinely scheduled WD clinic visits at approximately 6-12 month intervals. At enrolment, in addition to data from the clinic visit, retrospective data will be collected from the diagnostic evaluation and any relevant past medical history and a summary of WD medication history.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 12
Healthy Volunteers: f
View:

• Patient is able to provide, and has provided, written informed consent/assent

• Written documentation has been obtained in accordance with the relevant country and local privacy requirements, where applicable, including:

‣ For US sites: Authorization for Use and Release of Health Research Study Information

⁃ For EU sites: Data Protection Consent

• All patients diagnosed with WD including pre-symptomatic individuals and individuals with co-morbidities/diagnoses

• Any treatments including prescribed and homeopathic/traditional therapies or naive patients on no therapy

Locations
Other Locations
Belgium
University Hospital Leuven
RECRUITING
Leuven
France
Hospices Civils de Lyon
RECRUITING
Bron
HF Adolphe de Rothschild
RECRUITING
Paris
Germany
Charite-Univeritatsmedizin Berlin Hospital
RECRUITING
Berlin
Universitatsklinikum Dusseldorf
RECRUITING
Düsseldorf
Hannover Medical School (MHH)
RECRUITING
Hanover
Universitätsklinikum Leipzig
RECRUITING
Leipzig
Poland
Institute of Psychiatry and Neurology
RECRUITING
Warsaw
The Children's Memorial Health Institute
RECRUITING
Warsaw
Saudi Arabia
King Faisal Specialist Hospital in Riyadh
RECRUITING
Riyāḑ
Spain
University Hospital Clínic de Barcelona, C. de Villarroel
RECRUITING
Barcelona
Hospital Universitario GC Dr Negrín
RECRUITING
Las Palmas De Gran Canaria
Hospital Universitario Virgen del Rocío
RECRUITING
Seville
Hospital Universitario Y Politécnico La Fe
RECRUITING
Valencia
United Kingdom
Leeds Teaching Hospitals NHS Trust
RECRUITING
Leeds
Royal Free Hospital
RECRUITING
London
Contact Information
Primary
Carla Bennett
clinicaloperations@orphalan.com
+44 (0)7918380893
Backup
Maureen Richardson
clinicaloperations@orphalan.com
Time Frame
Start Date: 2022-06-29
Estimated Completion Date: 2027-12
Participants
Target number of participants: 500
Sponsors
Leads: Orphalan
Collaborators: Ergomed

This content was sourced from clinicaltrials.gov