For additional help, please contact our Information Resource Center (IRC) at
(800) 955-4572, Monday through Friday, 9 a.m. to 6 p.m. ET.

Disease Registries: 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.  Registries often contact patients on a regular basis to monitor their illness.  The information helps researchers develop new therapies. 

Agency for Toxic Substances & Disease Registry (ATSDR)
(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
(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
• Blood and/or tissue samples will be collected 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
No Web site
(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, kab713@aol.com

CLL Disease Database
(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

The Large Granular Lymphocyte Leukemia Registry (LGL)
(813) 632-1390

Population served: People diagnosed with LGL leukemia in the United States
The Registry collects, manages and analyzes information while maintaining a bank of blood and tissue samples from LGL leukemia patients.  This program is a part of the Hematologic Malignancies Program at H. Lee Moffitt Cancer Center & Research Institute, in Tampa, FL.

You are eligible to join the registry if:

• You have a confirmed diagnosis of LGL leukemia

Harvard Study of Genetic Factors that Lead to Lymphoma
(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

The Slone Epidemiology Center at Boston Univ. - for Myeloma
(800) 231-3769

Population served: People diagnosed with myeloma in the United States
The center is enrolling patients who have been recently diagnosed with multiple myeloma in a voluntary research project called the Patient Registries at Slone: Myeloma.  The registry gathers information about the impact of myeloma on patients' physical, emotional, social and economic well-being.

You are eligible to join the registry if:

• You have been diagnosed with multiple myeloma within the past four months
• You live in the United States
• You are 18 or older.

The Slone Epidemiology Center at Boston Univ. - for MDS
(800) 231-3769

Population served: People diagnosed with myelodysplastic syndromes (MDS) in the United States. The center established this registry to provide information about patients with MDS.
    
You are eligible to join the registry if:

• You have been diagnosed with MDS within the past four months
• You live in the United States
• You are 18 or older

Disclaimer: The information housed on this page is regularly reviewed.  Please contact TheDirectory@LLS.org if a link is not working, if information needs to be updated, or if you would like to submit your organization for possible inclusion.