If you have any questions on the LAL-D Registry please contact Alexion Medical Information via email at medinfo@alexion.com
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LAL-D is rare and there are limited data on the natural history and care of patients with this disease. Registries can contribute to the understanding in any disease area, but they are particularly important for rare disorders such as LAL-D, where it provides a means to gather evidence and increase the growing body of information. The LAL-D Registry collects longitudinal data on patients with LAL-D in order to increase understanding of the disease, evaluate the long-term effectiveness of treatments, and improve patient care.
Participation in the LAL-D Registry is voluntary on the part of both physicians and patients. However, center and patient participation is important to obtain the maximum value and most robust and representative analyses from the Registry.
Messages/Statements from Participating HCPs
Medical decisions are based on Science – 'evidence-based medicine'. Data from disease registries is a key component of the scientific basis of our understanding of diseases such as LAL-D. We would value your participation. Thank you.
— Dr. William Balisteri
The LAL-D registry represents a unique opportunity to understand the clinical features and the outcome of children and adults with this rare lysosomal storage disorder affecting primarily the liver. I encourage all health care professionals working in the field of liver disease and metabolic disorders to contribute to the project, joining the already numerous number of centers involved in this important scientific initiative.
— Dr. Lorenzo D'Antiga
The Registry provides important insights into LAL-D which are critical in facilitating early recognition of affected individuals, with the goal of improving outcomes.
— Dr. Don Wilson
I think that the registry is a great idea even if it wasn’t required by regulators. It provides us with collective knowledge and information about a condition that we are learning more about every day.
