Paroxysmal Nocturnal Hemoglobinuria (PNH)

Ask the Pediatric Experts: Session from the Patient and Family Conference in Salt Lake City, UT 2023

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Topic(s)
Related Bone Marrow Failure Diseases and Malignancies
Pediatric Bone Marrow Failure Diseases
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Bone Marrow Transplant
Aplastic Anemia
Myelodysplastic Syndromes (MDS)
Presenter(s)
Suneet Agarwal, MD, PhD
Michael Pulsipher, MD
Suneet Agarwal, MD, PhD, from Boston Children's Hospital answered parents' questions in this session from the Patient and Family Conference in Salt Lake City, Utah. Find the answers to your most pressing question in this recording.

Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria

The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.

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