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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Because we want to be sure that our visitors find the most relevant resources, we've listed these organizations in order of relevancy from most specifically relevant to most generally relevant to the topic of this page.
Agency for Toxic Substances & Disease Registry (ATSDR)
Contact: (800) 232-4636
Population served: People in the United States
ATSDR, an agency of U.S. Department of Health and Human Services, serves the public by using the best science, taking responsive public health actions and providing health information to prevent harmful exposures and diseases related to toxic substances.
- Provides public health assessments of waste sites
- Provides health consultations concerning specific hazardous substances
- Provides health surveillance and registries
- Provides information about substances found in the environment/workplace
- If appropriate, will conduct public health assessments when petitioned by concerned individuals
Hematologic Studies at Creighton University
Contact: (800) 648-8133, ext. 5517
Population served: Two or more blood relatives affected with a hematologic malignancy; two or more blood relatives, one or more of whom is diagnosed with a hematologic malignancy and one or more diagnosed with another type of cancer, in the United States
The goal of these studies is to identify the cause(s) of hematologic cancers.
In Phase I, participants will be asked to:
- Complete detailed questionnaires on family demographics and cancer histories
- Provide access to medical and pathology records for formal documentation of cancer and, if possible, retrieval of diagnostic slides and tissue blocks for review and analysis
Any pattern in the findings that appears to be unique will help the university decide if a family has an increased risk of cancer due to genetic factors. Identified families will then have an opportunity to participate in Phase II of the research program.
In Phase II, researchers will:
- Study and identify genes associated with familial clustering and susceptibility to hematologic malignancies
- Study the interaction of genetics and environmental exposures in the development of these cancers
- Collect blood and/or tissue samples for molecular genetic testing. If an abnormality or mutation is found, the information will be offered to the participants
All information is confidential.
The Familial Hematological Malignancy Research Project
Contact: (718) 304-7213
Population served: People who have two or more family members diagnosed with a blood cancer in the United States
This study is investigating families with two or more family members diagnosed with hematologic (blood) cancers, including lymphoma, leukemia, myeloma, myelodysplastic syndromes, myelofibrosis, polycythemia vera and Waldenström macroglobulinemia. The goal of the study is to determine if a genetic basis exists for these hematological malignancies.
For more information on eligibility and what is required to participate, contact Dona Wickramsinghe, M.D., Cancer Research Foundation, Familial Hematologic Malignancy Research Project, 1327 Little Whaleneck Road, Merrick, NY 11566; (516) 665-3279, email@example.com.
The National Children's Study
Population served: Children in the United States from before birth until age 21.
This study will examine the effects of the environment on the growth, development, and health of children across the United States, following them from before birth until age 21. 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.
The three recruitment strategies for this study include:
- Provider-based: Women will be given information about the study through their existing healthcare providers (i.e., doctors, midwives, public health nurses) in a familiar and trusted environment
- Enhanced Household-based: The study will be introduced to potential participants through door-to-door enrollment at their homes
- Two-Tiered (High Intensity/Low Intensity): This recruitment strategy will use the public media to introduce the study to potential participants through either low or high intensity data collection
Centre for Lymphoid Cancer - Familial Lymphoid Cancer Study
Contact: (604) 675-8172
Population served: People who are diagnosed with a lymphoid cancer (Hodgkin lymphoma, non-Hodgkin lymphoma, lymphocytic leukemia or myeloma) or directly related to somebody diagnosed with a lymphoid cancer, worldwide
The study's goal is to identify inherited genetic factors that influence susceptibility to lymphoid cancers or influence treatment effectiveness for these diseases.To participate, you will:
- Answer questions regarding health and family history by telephone interview
- Provide a small blood sample
- Provide contact information for first-degree relatives interested in participating
If you or someone you know would like to participate, please contact the Project Coordinator, Amy English, by phone, email firstname.lastname@example.org or mail to Amy English, Lymphoma Families Study Coordinator, 7th Floor BC Cancer Research Center, 675 West 10th Ave., Vancouver, BC, Canada V5Z 1L3. All inquiries are kept confidential, and no travel is necessary.
NCI Genetic Epidemiology Branch - Familial Chronic Lymphocytic Leukemia Study
Population served: Two or more living individuals in a family with a history of chronic lymphocytic leukemia (CLL). Parents, siblings and adult children of affected family members, along with other blood relatives who are genetically linked, may also take part.
The goal of the study is to find the gene or genes that cause this type of leukemia to occur within a family, describe the clinical features of familial CLL, explore whether families prone to familial CLL are also at greater risk of other types of leukemia or cancer, and identify biomarkers or markers that predict risk in family members.
Those who join the study will be asked to:
- provide a blood sample or cells rinsed from the inside of the cheek for genetic studies
- provide personal and medical history and family history information
- give consent to obtain medical records for cancer and related conditions
Some participants will be offered the opportunity to visit the Clinical Center in Bethesda Maryland at no cost to them for more detailed clinical, genetic and laboratory studies aimed at finding other factors that contribute to risk among family members.
CLL Disease Database
Contact: (303) 570-3792
Population served: People diagnosed with chronic lymphocytic leukemia (CLL) worldwide
This CLL Disease Database contributes to the diagnosis, prognosis and treatment of CLL:
- Collects and records white and red blood cell counts while gathering date of diagnosis, age of the patient and intervals of time between initial and subsequent treatments
- Provides analyses of the data to public health officials to help support conclusions about the age, gender, geographical distribution of the disease
Harvard Study of Genetic Factors that Lead to Lymphoma
Contact: (617) 632-3029
Population served: Two or more family members who are diagnosed with Hodgkin or non-Hodgkin lymphoma in the United States
The goal of this study is to identify individuals with lymphoma who also have other family members with the disease. Of particular interest are families in which parents and children or siblings are affected with lymphoma.
People qualified to take part in the study will need to:
- Sign a consent form
- Complete a family health history questionnaire
- Provide blood samples and mouth swabs
- Agree to the release of the patient's medical records and consent to allow researchers to speak with the patient's physician
NCI Genetic Epidemiology Branch - Waldenström's Macroglobulinemia
Population served: Persons from families with two or more members affected with Waldenström's Macroglobulinemia (WM). Persons who were diagnosed with WM at an early age (less than 35 years old) even if no one else in their family has WM.
The National Cancer Institute of the National Institutes of Health is conducting a study to obtain clinical information about WM and to determine what causes WM to sometimes develop in two or more family members.
Those who join the study will be asked to:
- complete a questionnaire that asks about your family's structure and medical history and about certain factors that may be important in causing WM
- give permission to obtain medical records documenting the diagnosis of WM in the affected family members
- agree to provide blood samples from both affected and unaffected family members for a variety of laboratory studies.
Patient Database - for the diagnosis of Waldenström's Macroglobulinemia
Population served: people diagnosed with Waldenström's Macroglobulinemia (WM) worldwide
A family disease registry, called Patient Database (PDB), conducted in cooperation with the International Waldenström's Macroglobulinemia Foundation (IWMF)
What is does:
- Gathers information in four major units that cover Patient History, Test Results, Treatments and Drugs, and Signs and Symptoms
- This information collected from individual patient histories are combined to provide invaluable information about the nature and effects of WM. The PDB is an on-going, living history that tracks WM patient health. It is not a static, one-time entry of data. Patients are encouraged and reminded to enter all of their periodic test results and any treatments, side effects and symptoms whenever they occur. The PDB, therefore, tracks the condition of each patient by the information entered by the patient for as long as he or she has WM.
- A special feature of the PDB is the personal table of test results that is available for each participant. This table shows the date, test type, and result of each measurement in chronological order so that the patient can study the table to review the changes that have occurred over time. Such a table can be most helpful in deciding how these test results correspond to symptoms and treatment outcomes. The personal test result table is viewable online only by the participating patient; it can also be printed to share with doctors and specialists as needed.
- You will need some records, especially test results, in order to provide a complete personal medical history. The PDB provides instructions on how to get any records you may not currently have in your possession. As more units come available for patients to use, periodic announcements will be made to alert participants that these units are ready for data entry.
- To begin the registration process please use this link: http://www.iwmfdatabase.com/.