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Selected Observational Studies

Here you can find selected observational studies currently enrolling participants. 

Atypical Spitzoid Tumor Study

This study is for people with an atypical spitzoid “Spitz” tumor or spitzoid melanoma. Participants are asked to share medical records, complete online surveys, donate a portion of their tumor for research (optional), and provide a saliva sample for genetic testing. To learn more and join, visit the study website, contact the study team by phone at 1-800-518-8474 or email at NCIFamilyStudyReferrals@nih.gov.

Type: Observational
Ages: 2 and up
Cost: Free
Duration: Ongoing
Location: At home
Next Step: Visit website

Brain and Spinal Cord Tumor Study

This study is for people with central nervous system (CNS) cancers. Participants are evaluated at the NIH Clinical Center in Bethesda, Maryland, asked to complete questionnaires, and donate tissue and blood samples for evaluation. Participants are connected to doctors for disease management and new treatment options. To learn more and join, visit the NCI-CONNECT website or contact the study team directly at (240) 760-6530 and by email at NCICONNECT@mail.nih.gov.

Type: Observational
Ages: 18 and up
Cost: Free
Duration: One time 
Location: Bethesda, MD
Next Step: Visit website

Cancer Prevention Study 

This study is for people without a history of a cancer at the time of enrollment and a member of a partner healthcare system. Participants are asked to donate saliva and other samples and to answer health questions over time. Participants receive results from surveys and tests. To learn more and join, visit the Connect for Cancer Prevention website or contact the study team directly at (866) 462-6621 and by email at ConnectSTudy@norc.org.

Type: Observational
Ages: 40 - 65 at enrollment
Cost: Free
Duration: Ongoing
Location: View all
Next Step: Visit website

Childhood Cancer Molecular Testing Program

This study is for children, adolescents, and young adults newly diagnosed with certain cancers and receiving treatment at a Children's Oncology Group-affiliated hospital. Participants provide tumor tissue and blood samples for molecular testing. Test results can help patients and their doctors determine the best treatment options. To learn more, visit the CCDI Molecular Characterization Initiative website.

Type: Observational
Ages: 25 and younger
Cost: Free
Duration: One time
Location: View all
Next Steps: Visit website

Cholangiocarcinoma Study

This study is for people diagnosed with cholangiocarcinoma. Participants are asked to share medical records, complete online surveys, donate tissue and blood from a previous biopsy or surgery (when available), and provide a saliva sample for genetic testing (results available if you choose). To learn more and join, visit the study website, contact the study team directly at (314) 273-2434 or email at pecgs@wustl.edu

Type: Observational
Ages: 18 and up
Cost: Free
Compensation: Yes
Duration: Ongoing
Location: St. Louis, MO
Next Step: Visit website

Colorectal Study

This study is for black women and men diagnosed with colorectal cancer before the age of 50. Participants are asked to share medical records, complete online surveys, donate tissue and blood from a previous biopsy or surgery (when available), and provide a saliva sample for genetic testing (results available if you choose). To learn more and join, visit the study website, contact the study team directly at (314) 273-2434 or email at pecgs@wustl.edu

Type: Observational
Ages: Less than 50 at diagnosis
Cost: Free
Compensation: Yes
Duration: Ongoing
Location: St. Louis, MO
Next Steps: Visit website

Fanconi Anemia Cancer Screening Study

This study is for adolescents and adults diagnosed with Fanconi Anemia. Participants are asked to complete questionnaires, provide access to medical records, undergo a physical examination, and meet with an ear, nose, and throat specialist as well as dental, gastroenterology and dermatology doctors. Participants may also be asked to provide blood and saliva samples and other specimens.  

Participants are evaluated at the NIH Clinical Center in Bethesda, Maryland. Costs such as transportation, meals, lodging, medical visits, and tests will be covered by the study. To learn more and join, visit the study website, contact the study team by phone at 1-800-518-8474 or email at ncifamilystudyreferrals@mail.nih.gov.

Type: Observational
Ages: 8 years and up
Cost: Free
Compensation: Yes
Duration: Ongoing
Location: NIH Clinical Center
Next Steps: Visit website

Leiomyosarcoma Project

This study is for people with leiomyosarcoma who live in the United States or Canada. Participants are asked to share experiences living with the disease, provide access to medical records, give a saliva sample, and possibly donate tissue and blood samples. Participants can receive results from testing of samples, if desired. To learn more and join, visit the project website.

Type: Observational
Ages: All
Cost: Free
Duration: Ongoing
Location: At home
Next Step: Visit website

Low Grade Glioma Study

This study is for people with initial diagnosis of low grade glioma (astrocytoma, oligo-astrocytoma or mixed, oligodendroglioma) who have had two or more surgeries to treat it. Participants are asked to share medical records, complete online surveys, and provide a saliva sample. To learn more and join, visit the OPTIMUM study website.

Type: Observational
Ages: 21 -79
Cost: Free
Duration: Annually for 4-5 years 
Location: At home
Next Step: Visit website

Multiple Myeloma Study

This study is for black women and men diagnosed with multiple myeloma. Participants are asked to share medical records, complete online surveys, donate tissue and blood from a previous biopsy or surgery (when available), and provide a saliva sample for genetic testing (results available if you choose). To learn more and join, visit the study website, contact the study team directly at (314) 273-2434 or email at pecgs@wustl.edu

Type: Observational
Ages: 18 and up
Cost: Free
Compensation: Yes
Duration: Ongoing
Location: St. Louis, MO
Next Step: Visit website

RASopathy Study

This study is for children and adults diagnosed clinically or through genetic testing with RASopathy syndromes such as Noonan, Costello, Legius, Cardiofaciocutaneous, and Capillary Arteriovenous malformation. Participants are asked to provide a complete health history and blood samples. Some participants will undergo a physical examination and imaging tests, as well as specialist evaluations including cardiology, endocrinology, oncology, and genetics at the NIH Clinical Center in Bethesda, Maryland.

Costs such as transportation, meals, and lodging will be covered by the study. To learn more and join, visit the study website, contact the study team by phone at 1-800-518-8478 or email at NCIFamilyStudyReferrals@nih.gov.

Type: Observational
Ages: All
Cost: Free
Duration: Ongoing
Location: At home and/or NIH Clinical Center 
Next Step: Visit website

Rare Solid Tumors Study

This study is for people with certain rare solid tumors. Family members may also join the study. Participants are asked to donate saliva, tumor tissue (when available), and sometimes blood, and to answer health questions over time. Genetic testing and counseling may be provided to suggest treatment for tumors. To learn more and join, visit the MyPART study website.

Type: Observational
Ages: All
Cost: Free
Duration: Ongoing
Location: At home or Bethesda, MD
Next Step: Visit website

Osteosarcoma Project

This study is for people with osteosarcoma and their families in the United States or Canada. Participants are asked to share experiences living with the disease, provide access to medical records, donate a saliva sample, and possibly donate tissue and blood samples. Participants can receive results from testing of samples, if desired. To learn more and join, visit the project website.

Type: Observational
Ages: All
Cost: Free
Duration: One time 
Location: At home
Next Step: Visit website

Tumor Tissue and Blood Donation Study

This study is for people with certain cancers receiving standard treatments (not experimental) at a participating hospital. Participants are asked to donate tumor tissue, blood samples, and health information. Participants receive free tumor biomarker testing to help identify additional treatment options. To learn more and join, visit the Cancer MoonshotSM Biobank website.

Type: Observational
Ages: 13 and up
Cost: Free
Duration: Ongoing during treatment 
Location: View all
Next Step: Visit website

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