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.
Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email infocenter@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.
Agency for Toxic Substances & Disease Registry (ATSDR)
Population Served: ATSDR is directed by congressional mandate to perform specific functions concerning the effect on public health of hazardous substances in the environment. These functions include public health assessments of waste sites, health consultations concerning specific hazardous substances, health surveillance and registries, response to emergency releases of hazardous substances, applied research in support of public health assessments, information development and dissemination, and education and training concerning hazardous substances.
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.
To increase understanding of the causes of lymphoma and to learn more about the genes that contribute to the disease.
- The study is based at Dana-Farber Cancer Institute in Boston, Massachusetts
LGL Leukemia Registry at UVA
Population Served:
Anyone diagnosed with Large Granulocytic Lymphocyte (LGL) Leukemia
To learn more about this rare form of blood cancer and how to treat it.
- Based at the University of Virginia Cancer Center in Charlottesville, under the direction of Thomas P. Loughran, Jr, MD
- Participation in the registry is voluntary. Patients will be studied over time to learn more about the disease.
- Patients will need to complete questionnaires and provide blood and tissue samples; these samples may be used to develop new tests or treatments.
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
To study families with multiple cases of chronic lymphocytic leukemia (CLL).
- The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is conducting a study to: find the gene or genes that cause this type of leukemia to occur in families; to describe the clinical features of familial CLL; to explore whether families prone to familial CLL are also at greater risk of other types of leukemia or cancer; to identify biomarkers or markers that predict risk in family members.
- Participants will be asked to provide a blood sample or cells, personal and medical history, and to give consent to obtain medical records.
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.
To obtain clinical information about Waldenstrom’s Macroglobulinemia.
- The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is conducting a study to learn about WM and to determine what causes WM to sometimes develop in two or more family members
- Participants will be asked to complete a questionnaire, give permission to obtain medical records and blood samples.
PROFILE: Investigating Breast Implant Associated ALCL
Population Served:
Health professionals caring for women with breast implants and a diagnosis of Anaplastic Large Cell Lymphoma
To better understand the role of breast implants in the etiology of primary Anaplastic Large Cell Lymphoma (ALCL).
-
PROFILE: Patient Registry for Breast Implants and Anaplastic Large Cell Lymphoma is a collaboration of The American Society of Plastic Surgeons, The Plastic Surgery Foundation, and the Food & Drug Administration (FDA), to conduct research and increase the scientific data on ALCL in women with breast implants.
-
Provides links to medical abstracts and resource information.
Pregnancy & Cancer Registry
Population Served:
Pregnant women with cancer, caregivers, survivors, health professionals
To collect information about the diagnosis and treatment of cancer in pregnancy, and to study the health of pregnant women with a history of cancer and their children.
- Gathers information about cancer found and treated during pregnancy at various hospitals into a single database.
- Designed to follow women and their children through diagnosis, treatment, delivery, childhood, adolescence and beyond.