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.
Disease Registries and Other Disease Studies
Other Helpful Organizations
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.
Population served: Anyone diagnosed with Inflammatory Bowel Disease (IBD) and Hepatosplenic T-Cell Lymphoma (HSTCL)
To explore potential risk factors for the development of HSTCL in IBD patients
- This study will collect demographic and clinical information from patients of any age with Inflammatory Bowel Disease (e.g. Crohn’s Disease and Ulcerative Colitis) and a confirmed diagnosis of Hepatosplenic T-Cell Lymphoma.
- There are no study-related therapeutic interventions, and patients continue under the care of their personal physicians.
- Patients will be asked to provide tissue samples. The samples will be stored for future evaluation to identify biomarkers that may predict the risk of developing HSTCL.
Population served: Families that have multiple known cases of lymphoma in adult family members
The Harvard Study is a grant-funded clinical trial designed to better understand genetic mechanisms involved in the heritability of lymphoma and leukemia.
Population served: Anyone with two or more blood relatives affected with a hematologic malignancy.
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
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.
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.
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.
Population served: Health professionals, researchers, public health officials
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.
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