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PNH Registry
Bringing Together Physicians and Patients
The PNH Registry is a global, observational, noninterventional study collecting safety, effectiveness, and quality of life data on patients with PNH. It was created in response to requests from regulatory authorities at the Food and Drug Administration (FDA) and the European Medicines Agency (EMEA) to collect long-term safety and effectiveness data on patients with PNH who are receiving therapy. In its commitment to patients, Alexion extended the charge of the registry to collect safety and additional information on patients with PNH, whether treated or not, in order to enhance understanding of the disease.
The ultimate goal of the PNH Registry is to increase medical understanding and knowledge about PNH and provide information that will help facilitate diagnosis and optimize treatment of PNH patients.
PNH Registry objectives: optimize patient management and outcomes
- To enhance the understanding of PNH demographics and natural history
- To capture the long-term outcomes of patients in order to better guide and assess therapeutic interventions
- To serve as a global resource for PNH information
The PNH Registry is designed to protect the confidentiality of patient data in accordance with all applicable privacy regulations. All patients diagnosed with PNH can participate.
Benefits of participation: helping physicians and patients
The PNH Registry brings together physicians and patients from around the world. You will be joining a global community of physicians contributing to the largest, most comprehensive database on PNH.
Additional benefits of the PNH Registry include:
- Enhancing understanding of PNH diagnosis and treatment
- Helping define treatment objectives, practice patterns, and best practices
- Promoting evidence-based medicine
- Promoting scientific collaboration in the PNH community
- Providing an opportunity to participate in periodic registry meetings to share data and treatment experience
Because PNH is a rare disorder, the experience of every patient counts toward advancing and understanding the disease while helping to raise awareness of PNH in the medical community at large — please consider participating.
Who can contribute to the PNH Registry?
- All physicians treating PNH patients — regardless of therapy
- All patients who have been diagnosed with PNH are eligible to be enrolled
Data are entered at enrollment and approximately every 6 months thereafter. Physicians are not required to examine patients at that time. Data entry minimally includes: demographics, medical history, PNH diagnosis, flow cytometry, symptomology, safety events, clinical outcomes, and pregnancy. Physicians will receive compensation for their participation.
To learn more
Click here to register and receive more information about participating in the PNH Registry.
Please contact the PNH Registry hotline:
Email: PNHregistry@iconplc.com
Telephone: 1.800.913.4893
