Understanding the Paroxysmal Nocturnal Hemoglobinuria Journey

Sponsor

Image
Exafield Logo Transparent.png

Contact Info

Rosa Cruz

cruz@exafield.com

Start Date: September 2, 2025 End Date: September 2, 2026

Market Research Study: Market research study is conducted to understand the patient population by gathering information from patients about their experience with types of treatment, awareness of therapeutic options, resources for making informed decisions, and health care providers and services. This type of research can provide insights that may inform product development, improve patient care, and identify unmet needs of patients. If you are interested in learning more about your possible participation in this study, please complete the form. Your information will be forwarded directly to the study sponsor.

Purpose

The purpose of this study is to better understand the treatment journey and experiences of people living with Paroxysmal Nocturnal Hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH), specifically those currently in a “watch and wait” period after being diagnosed.

Status
Recruiting
Bone Marrow Disease(s)
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Gender
Female
Male
Age Group
21 years and older
Accepts Healthy Volunteers
No
Inclusion Criteria

You may be eligible to participate if you:

  • Are 21+ years of age
  • Have been formally diagnosed by a physician with Paroxysmal Nocturnal Hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH) within the last 5 years
  • Received your diagnosis at least 3 months ago
Exclusion Criteria
  • Individuals with Myelodysplastic Syndromes: (my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at… (MDS) or Aplastic Anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…

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