Study identification

EU PAS number

EUPAS37218

Study ID

37332

Official title and acronym

Swiss Soliris® and Ultomiris® Reimbursement Registry SSURR: An observational registry for capturing data of patients suffering from paroxysmal nocturnal hemoglobinuria (PNH) who are treated with Soliris® (eculizumab) or Ultomiris® (ravulizumab)

DARWIN EU® study

No

Study countries

Switzerland

Study description

Swiss Soliris® and Ultomiris® Reimbursement Registry SSURR: An observational registry for capturing data of patients suffering from paroxysmal nocturnal hemoglobinuria (PNH) who are treated with Soliris® (eculizumab) or Ultomiris® (ravulizumab). The participating centres are determined by FOPH/BAG and per requirements a study report is submitted every year, usually at the last quarter.

Study status

Ongoing
Research institutions and networks

Institutions

Inselspital
First published:
01/02/2024
Institution
Hôpitaux Universitaires de Genève Switzerland, Centre Hospitalier Universitaire Vaudois Switzerland, Inselspital Bern Switzerland, Kantonsspital Luzern Switzerland, Universitätsspital Basel Switzerland, Kantonsspital Aarau Switzerland, Universitätsspital Zürich Switzerland, Kantonsspital Chur (for Ultomiris only) Switzerland, Ente Ospedaliero Cantonale Bellinzona Switzerland, Kantonsspital St. Gallen Switzerland

Contact details

Jan Bolten

Primary lead investigator

Study timelines

Date when funding contract was signed

Actual:

Study start date

Actual:

Data analysis start date

Actual:

Date of final study report

Planned:
Sources of funding
Pharmaceutical company and other private sector 

More details on funding

Alexion Pharma GmbH
Regulatory

Was the study required by a regulatory body?

Yes

Is the study required by a Risk Management Plan (RMP)?

Not applicable