Risk Assessment and TEsting (REGENERATE) study at the Dana-Farber Cancer Institute. This study will assess perceptions to obtaining genetic education, genetic testing, and cancer screening through focus group discussion among Black and Latin/Latino/Latina/Latinx communities. We are looking for Patient Advocates, Community Leaders, Community Healthcare Workers, Community Stakeholders, and healthcare providers that serve these populations to be a part of our focus group discussion.

We are trying to learn about different perspectives about obtaining genetic education, genetic testing, and cancer screening. We want to use the information we learn to create a remote online genetic education system that will be used to access genetic education, genetic testing, and cancer screening more easily.

Researchers at The Ohio State University are seeking to enroll anyone with a pathogenic/likely pathogenic BAP1 mutation. We will also enroll anyone with an uncertain variant in the BAP1 gene if they have had a BAP1-related cancer (eye melanoma, mesothelioma, renal cell (kidney) carcinoma, meningioma, hepatocellular (liver) carcinoma, or cholangiocarcinoma), or a non-malignant skin lesion called a BAP1-inactivated melanocytic tumor (BIMT; also called atypical spitz tumor/AST or BAPoma). We are doing this to identify and better understand the cancer and skin tumor risks associated with having a BAP1 mutation. At present the information we have on these risks was obtained from fairly small numbers of selected patients, and may not accurately reflect the true risks for people with BAP1 mutations.

To join this study you would need to speak briefly by phone with the research team; complete and sign a consent form, give permission for us to obtain records on any cancers/tumors you have had, and provide a blood or saliva sample. We will provide a kit and pay for shipping of the sample. We would like to include any of your relatives with BAP1 mutations as well.

We can also enroll any of your untested blood relatives and test them for your BAP1 mutation in our research lab.

Genetic testing has played a critical role in the understanding of the genetic etiology and prevalence of genetic predisposition in pediatric CNS tumors. Despite this rise in knowledge, there is a lack of consensus on a standard practice of germline genetic testing among pediatric patients with CNS tumors.

This study aims to investigate the current practice of germline testing in terms of which providers are involved in the germline risk assessment and ordering of testing, how germline testing decisions are made, and the process of ordering germline genetic testing at many institutions across the United States.

see attached criteria

see criteria attached

see attached

PreCharge is an IRB approved, nationwide study funded by the National Cancer Institute. The purpose of this study is to test a digital program designed to help people affected by hereditary cancer and who have not been diagnosed with cancer improve their mental and emotional well-being.

Those interested in participating in the study will be asked to complete a brief screening assessment to see if they are eligible. Eligible participants will be asked to: complete a more in-depth online survey that will take 10 minutes to complete; receive daily, personalized text messages for 1 month; complete as many online activities as they would like for 1 month; complete a final survey after 1 month of receiving text messages and using the online program.