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NCT01374360 | RECRUITING | Paroxysmal Nocturnal Hemoglobinuria

Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry
Sponsor:

Alexion Pharmaceuticals, Inc.

Brief Summary:

This study is a collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal Hemoglobinuria (PNH).

Condition or disease

Paroxysmal Nocturnal Hemoglobinuria

Detailed Description:

Collection of data to evaluate safety and characterize progression of Paroxysmal Nocturnal Hemoglobinuria (PNH).

Study Type : OBSERVATIONAL
Estimated Enrollment : 5950 participants
Official Title : Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry
Actual Study Start Date : 2004-10-29
Estimated Primary Completion Date : 2024-12-31
Estimated Study Completion Date : 2024-12-31

Information not available for Arms and Intervention/treatment

Ages Eligible for Study:
Sexes Eligible for Study: ALL
Accepts Healthy Volunteers:
Criteria
Inclusion Criteria
  • * Patients of any age, including minors, with a diagnosis of PNH or a detected PNH clone, including patients previously treated with Soliris or Ultomiris and withdrawn from treatment. Patients who are minors must have parent/legal guardian consent and must be willing and able to give assent, if applicable as determined by the Ethics Committees/Institutional Review Boards. Upon attaining adulthood, these patients must be re-consented.
  • * Ability to comprehend and sign consent to have data entered in the PNH Registry.
Exclusion Criteria
  • * Inability or unwillingness to sign informed consent.
  • * Patients currently enrolled in an interventional clinical trial for treatment of PNH cannot be enrolled in the Registry at the same time.
Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

Location Details

NCT01374360

Please Choose a site

How to Participate

Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.

Locations

RECRUITING

United States, Massachusetts

Contact the PNH Registry at Alexion Pharmaceuticals, Inc. for worldwide locations.

Boston, Massachusetts, United States, 02210