We are pleased to announce the launch of the Global PNH Patient Registry, a collaborative effort between the Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD®) to study PNH.
Overview of Research Study
The Global PNH Patient Registry is more than a versatile online system that securely collects and stores data for medical research; it is an interactive dynamic participant-driven resource that can empower and unite the PNH community through shared knowledge. Registry participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the registry sponsor,* AAMDSIF will ensure that data privacy and confidentiality are strictly maintained. Participation in the Global PNH Patient Registry is free and voluntary, and participants may withdraw at any time. The Global PNH Patient Registry will include data collection on demographics, quality of life, treatment, diagnosis, and PNH symptoms. It can be completed in stages throughout the course of the study.
The Global PNH Patient Registry is a powerful opportunity for individuals with PNH and their family members to contribute directly to research that will enhance our understanding of PNH, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of PNH. Every patient experience is a unique and invaluable part of the natural history of PNH.