Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry (M07-001)

Study identification

• EU PAS number:
  EUPAS36476
• Study ID:
  47935
• Official title and acronym:
  Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry (M07-001)
• DARWIN EU® study:
  No
• Study countries:
  Argentina

  Australia

  Belgium

  Canada

  Colombia

  France

  Germany

  Japan

  Korea, Republic of

  Netherlands

  Spain

  Sweden

  Switzerland

  Taiwan

  Türkiye

  United Kingdom

  United States
• Study description:
  The PNH Registry is a global observational, non-interventional study following patients of any age with a diagnosis of PNH or with a detected PNH clone. The goals of the PNH Registry are to compile data on the progression of PNH and to optimize clinical decision making through enhanced understanding of PNH and its treatments.
• Study status:
  Ongoing

Study timelines

Date when funding contract was signed

Actual:01/09/2007

Study start date

Actual:14/04/2008

Date of final study report

Planned:31/12/2025

Sources of funding

Pharmaceutical company and other private sector 

More details on funding

Alexion Pharmaceuticals Inc.

Regulatory

• Was the study required by a regulatory body?:
  Yes
• Is the study required by a Risk Management Plan (RMP)?:
  EU RMP category 3 (required)