Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

Study ID
M07-001

Cancer Related
Yes

Healthy Volunteers
No

Study Sites

  • Clements University Hospital
  • UT Southwestern Ambulatory Services
  • Zale Lipshy University Hospital
  • Parkland Health & Hospital System

Contact
James Pond
214/648-7030
blake.pond@utsouthwestern.edu

Principal Investigator
Robert Collins

Official Title

Paroxysmal Nocturnal Hemoglobinuria (PNH) Registry

Brief Overview


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

Summary


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

Participant Eligibility


Inclusion Criteria:

- Patients of any age, including minors, with a diagnosis of PNH or a detected PNH
clone, including patients previously treated with Soliris and withdrawn from
treatment. (Subjects under the age of eighteen years must have parent/legal guardian
consent. Upon turning eighteen years of age, these subjects must be re-consented).

- Ability to comprehend and sign consent to have data entered in the PNH Registry.