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PNH Resources

  • A detailed look at how to C.A.T.C.H. PNH

    The devastating nature of PNH demands early diagnosis, which is essential for improved patient management and prognosis. This document outlines the high-risk patient populations that the International Clinical Cytometry Society (ICCS) recommend be evaluated for PNH. Additional screening information is provided to ensure that PNH can more readily be ruled in or out using high-sensitivity flow cytometry and a comprehensive clinical assessment.

"This standardized report is going to be very helpful for clinicians and I am sure many technicians as well.

The effort to standardize flow reporting by all labs in Canada is impressive. The entire clinical flow cytometry community could learn from this effort."

- Paul K. Wallace, PhD
2016-2018 President
International Society for Advancement of Cytometry (ISAC)
2016 Advocacy and Program Committee Member
International Clinical Cytometry Society (ICCS)
Director, Flow and Image Cytometry Facility Roswell Park Cancer Institute
Associate Professor of Pathology State University of New York at Buffalo
Professor of Oncology

The following 2 checklists have been developed by the Canadian PNH Network to assist Health Care Providers in the monitoring and management of patients with PNH.

  • Initial evaluation: Patient with newly diagnosed PNH

    This checklist reviews all the tests and evaluations that should ideally be done in patients with a new diagnosis of PNH (i.e., detection of any size of PNH clone by flow cytometry). This checklist allows a Health Care provider to define the clinical management priorities and provide a comprehensive baseline for future follow-up. For newly diagnosed patients already receiving medications that increase meningococcal risk, an additional sub-checklist provides guidance on aspects of prophylaxis that should be addressed.

  • Follow-up of PNH patients after initial workup – routine visit (every 3-4 months) for all patients, regardless of treatment

    This checklist and its sub-checklists outline the tests that should be performed at routine follow-up visits (every 3 to 4 months) and the annual visit for all patients with an established diagnosis of PNH, regardless of whether or not they are receiving treatment. Additional guidance is provided for ongoing monitoring of patients with asymptotic small PNH clones.