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
Mission: 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
CLL Patient Databases
Population served: People diagnosed with chronic lymphocytic leukemia (CLL), worldwide
Mission: Maintains information on a large number of patients with chronic lymphocytic leukemia to contribute to medical research about its diagnosis, prognosis, and treatment.
- Produces free, online reports that are statistical summaries of age, gender, geographical distribution of the incidence of CLL, morbidity, and effectiveness of treatments
- Participation in the database is voluntary and free
- Offers free spreadsheets allowing patients to prepare charts of their blood reports and calculation of lymphocyte doubling time.
Harvard Study of Genetic Factors that Lead to Lymphoma
Contact: Dr. Jennifer Brown (firstname.lastname@example.org)
Population served: Families that have multiple known cases of lymphoma in adult family members
Mission: The Harvard Study is a grant-funded clinical trial designed to better understand genetic mechanisms involved in the heritability of lymphoma and leukemia.
Hematologic Studies at Creighton University Medical Center
Population served: Anyone with two or more blood relatives affected with a hematologic malignancy.
Mission: To identify syndromes linked to hematologic malignancies (acute and chronic leukemia, myelodysplasia, myeloproliferative disorders, non-Hodgkin's lymphoma, Hodgkin's disease, multiple myeloma, and related disorders.
- Study of families with two or more members affected with a hematologic malignancy.
LGL Leukemia Registry at UVA
Population served: Anyone diagnosed with Large Granulocytic Lymphocyte (LGL) Leukemia
Mission: 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
Mission: 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.
Mission: 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.
The National Children's Study
Population served: Health professionals, researchers, public health officials
Mission: The National Children's Study will examine the effects of the environment, as broadly defined to include factors such as air, water, diet, sound, family dynamics, community and cultural influences, and genetics on the growth, development, and health of children across the United States, following them from before birth until age 21 years. The goal of the Study is to improve the health and well-being of children and contribute to understanding the role various factors have on health and disease.
- Free publications about The National Children's Study are available by calling the NICHD Information Resource Center at 1-800-370-2943.