About LPLD Patient Registry

The LPL Deficiency Association™ is the national patient organization dedicated to improving the lives of patients with Lipoprotein Lipase Deficiency (LPLD) by providing support, education, awareness, and advocacy to help patients access accurate and timely diagnosis and treatment.

LPLD affects one in one million people. Most cases of LPLD are diagnosed during childhood before age 10 with approximately 25 percent diagnosed before age one. In other cases, the rare disease may not be identified until adulthood. People with LPLD have very high triglyceride levels because they lack lipoprotein lipase, the enzyme that clears fat from the blood. Symptoms can include:

There are no FDA-approved treatments for LPLD. Currently, patients are treated by dietary restrictions of fats to manage their symptoms.

How will my information be used?

Information from the LPL Deficiency AssociationTM (LPLDA) Patient Registry will be used to further understand lipoprotein lipase deficiency and to develop new treatments. The data will help scientists to better understand the disease and may also be used to contact patients about clinical trials, including those investigating new treatments, for which they may be eligible. Participation in a clinical trial will be based solely upon the voluntary consent of the patient. Patients will need to initiate contact with interested researchers as researchers will not be able to obtain patient contact information from the LPLDA Patient Registry.