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Disease Registries and Other Disease Studies

Not sure what a disease registry is? A disease registry collects, manages and analyzes information on patients with a particular diagnosis over time, including blood and tissue samples, blood counts, symptoms, treatments, medical history and family medical history. The information collected helps researchers develop new therapies. Registries often contact patients on a regular basis to monitor their illness.

Please note that these resources are regularly reviewed to ensure that links still work correctly and that the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect, please email infocenter@lls.org.  If you would like for us to consider adding your organization to this resource, please complete and submit this form.

Agency for Toxic Substances & Disease Registry (ATSDR)

Contact: 800-232-4636
Population Served:

Serves the general public in the U.S. ATSDR is a federal public health agency of the U.S. Department of Health and Human Services

Genetic Study of Familial Chronic Lymphocytic Lymphoma

Contact: Website
Population Served:

Families with at least 2 first-degree relatives (parent, sibling or child) with lymphoma such as Chronic Lymphocytic Leukemia/Small Cell Lymphocytic Lymphoma, Non-Hodgkin Lymphoma, Hodgkin Lymphoma.

INTO-HLH: Hemophagocytic Lymphohistiocytosis Disease Registry

Contact: Website or (513) 916-7099
Population Served:

Patients, family members, and caregivers affected by Hemophagocytic Lymphohistiocytosis and health professionals

LGL Leukemia Registry at UVA

Contact: Website
Population Served:

Anyone diagnosed with Large Granulocytic Lymphocyte (LGL) Leukemia

NCI Genetic Epidemiology Branch- Familial Blood and Lymph Node Cancers

Contact: 800-518-8474
Population Served:

Families with 2 or more living individuals in the family with a history of the same lymphoproliferative disorder

NCI-Genetic Epidemiology Branch - Familial CLL

Contact: 800-518-8474
Population Served:

Families with 2 or more living individuals in the family with a history of CLL, or families in which one family member has CLL and one or more close relatives have a related blood or lymph cancer

NCI-Genetic Epidemiology Branch - Waldenstrom's Macroglobulinemia (WM)

Contact: 800-518-8474
Population Served:

People diagnosed with WM at any early age (less than 35 years) or families with 2 or more members diagnosed with WM.

PROFILE: Investigating Breast Implant Associated ALCL

Contact: ALCL@plasticsurgery.org
Population Served:

Health professionals caring for women with breast implants and a diagnosis of Anaplastic Large Cell Lymphoma

Pregnancy & Cancer Registry

Contact: 877-635-4499
Population Served:

Pregnant women with cancer, caregivers, survivors, health professionals