1 / 10

Registries are effective tools for population-based behavioral research (Bowen, 2011)

GENOMICS, ACRONYMS, AND UNDERSTANDING: TRANSLATING GENETICS RESEARCH FROM CANCER FAMILY REGISTRIES TO BEHAVIORAL MEDICINE Sherri Sheinfeld Gorin (Chair), Deb Bowen on behalf of the Behavioral Working Group of the CGN, Louise Keogh, Jan Lowery, Dennis Ahnen , Kristi Graves, and Sheri Schully.

evita
Download Presentation

Registries are effective tools for population-based behavioral research (Bowen, 2011)

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. GENOMICS, ACRONYMS, AND UNDERSTANDING: TRANSLATING GENETICS RESEARCH FROM CANCER FAMILY REGISTRIES TO BEHAVIORAL MEDICINE Sherri SheinfeldGorin (Chair), Deb Bowen on behalf of the Behavioral Working Group of the CGN, Louise Keogh, Jan Lowery, Dennis Ahnen, Kristi Graves, and Sheri Schully

  2. Genetics and genomics findings will create a positive impact on public health if genetic information is translated for disease prevention, early detection, and/or adoption of risk management behaviors. • Family cancer registries, offering case ascertainment, collection of validated family histories, and follow-up data, provide unique opportunities for translational research from gene discovery to population health.

  3. Registries are effective tools for population-based behavioral research(Bowen, 2011) • Recruit diverse and large samples • Offer participation in multiple studies • Retain registry members for future (and longitudinal) studies

  4. The aim of this symposium is: • To examine studies that have translated the findings from family registries to: (1) empirically-based recommendations for cancer care, (2) assessing clinical outcomes, and/or (3) population-level impacts.

  5. T1 Discovery Development of promising tests or interventions T0 T2 Knowledge Synthesis & Brokering Evidence based Recommendation or Policy Population Health Impact Healthcare Systems & Prevention Programs T4 T3 Schully, 2011

  6. We will highlight the contributions to behavioral medicine of two established international cancer genetics research consortia: • Colon Cancer Family Registry (CCFR) • Cancer Genetics Network (CGN)

  7. THE COLON CANCER FAMILY REGISTRY (C-CFR) • Begun in 1997 international consortium, funded by the NCI • To support research on colorectal cancer etiology • Six collaborating centers in the US, Canada and Australasia (in California, Hawaii, Minnesota, Ontario, Canada; Washington; Melbourne,Australia) • Recruited 10,019 probands across all sites (2007) • Family cancer registries, offering case ascertainment, collection of validated family histories, and follow-up data • Translational Working Group (TrWG) has described sharing individual genetic test results (Keogh et al., in preparation)

  8. Cancer Genetics Network (Anton Culver 2008; Bowen, 2011) • Begun in 2007, funded by NCI, with 8 US sites • Resource to study the inherited predisposition to cancer • Enrolled clinical and population–based samples: •20,000 probands who can be re-contacted, •16,000 families, and •435,000 individual family members. • Core dataset : socio-demographics, hx of cancer, surgeries, 4-generation cancer family pedigree, hx of tobacco use, interest in genetic counseling. • Some data available on cancer-related outcomes, screening, counseling, and attitudes/beliefs. • Limited biospecimens.

  9. Recruitment and retention in the Cancer Genetics Network:Deb Bowen on behalf of the CGN Disclosing Genetic Research Results: Experiences of the Colon Cancer Family:Louise Keogh, Douglass Fisher, Sheri Schully, Jan Lowery, Dennis Ahnen, Judi Maskiell, NoralaneLindor, John Hopper, Terrilea Burnett, Spring Holter, Sherri SheinfeldGorin, Mercy Laurino, Pam Sinicrope for the Colon Cancer Family Registry Outcome analysis of the Family Health Promotion Project: An intervention to improve colonoscopy screening in families at high risk of colorectal cancer: Jan Lowery, Dennis Ahnen, Al Marcus, Nora Horick, Dianne Finkelstein

  10. Lynch Syndrome: A Behavioral Perspective: Dennis J Ahnen MD, Jan Lowery PhD, Al Marcus PhD A Pilot Study Investigating the Gene Disclosure Process to Colon Cancer Family Registry (CCFR) Participants: Pamela Sinicrope, Kristi Graves, Sandra Nigon, Mary Jane Esplen, Carrie Zabel, Susan Peterson, Jan Lowery, Sherri SheinfeldGorin, Pat Harmon, Ellen McGannon, Christi Patten, NoralaneLindor How do individuals decide whether to accept or decline an offer of genetic testing for colorectal cancer? Louise Keogh, Belinda McClaren, Judith Maskiell, Heather Niven, Alison Rutstein, Louisa Flander, Clara Gaff, John Hopper, Mark Jenkins Discussant: Sheri D. Schully, Ph.D.

More Related