Disease Registries and Other Disease Studies

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

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.

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

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

INTO-HLH (Insight into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis) is a disease registry aimed at advancing what is known about HLH. The insights obtained from this registry will help doctors to better diagnose and manage HLH and improve treatment outcomes for future patients.

• INTO-HLH Registry is a collaboration between Cincinnati Children's Hospital Medical Center (CCHMC), Texas Children's Hospital (TCH), and Sobi North America as the industry sponsor.
• The registry is open to all forms of HLH: Primary; Secondary (Macrophage Activation Syndrome, Cytokine Release Syndrome, Malignancy-Associated HLH).

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.

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

To study families with multiple cases of lymphoproliferative disorders.

• The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is studying the causes of familial blood and lymph node cancers. The primary focus is on: Chronic lymphocytic leukemia (CLL), Hodgkin Lymphoma (HL), Non-Hodgkin Lymphoma (NHL), Waldenstrom’s macroglobulinemia (WM), and Multiple myeloma (MM).
• The clinical evaluation includes a medical history and physical examination and may also entail disease-related laboratory or imaging studies. In certain cases, patients may be invited to visit the NIH Warren G. Magnuson Clinical Center in Bethesda, Maryland, for evaluation. Otherwise, study components can often be completed in or near the patient's home community.
   

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.

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.

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.

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.