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.
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Agency for Toxic Substances & Disease Registry (ATSDR)
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
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
Population Served:
Patients, family members, and caregivers affected by Hemophagocytic Lymphohistiocytosis and health professionals
LGL Leukemia Registry at UVA
Population Served:
Anyone diagnosed with Large Granulocytic Lymphocyte (LGL) Leukemia
NCI Genetic Epidemiology Branch- Familial Blood and Lymph Node Cancers
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
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)
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
Population Served:
Health professionals caring for women with breast implants and a diagnosis of Anaplastic Large Cell Lymphoma
Pregnancy & Cancer Registry
Population Served:
Pregnant women with cancer, caregivers, survivors, health professionals