BACKGROUND: Genetic data help detect preclinical Alzheimer's disease and target individuals for clinical trials, making genetic research engagement critical for continued advancement in dementia prevention and treatment. OBJECTIVE: To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers. METHODS: Data from the National Alzheimer's Coordinating Center Uniform Data Set (2009-2016) were obtained along with genetic sample availability. Logistic regression was used to assess independent contributions of demographic and clinical characteristics to the probability of sample provision. Sites contributing data completed a brief survey exploring regulatory and scientific issues related to genetic research engagement. RESULTS: Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, non-Hispanic ethnicity, normal cognition, and greater than 5 years of follow-up were associated with greater probability of availability. Sites identified refusals as the most frequent barrier to sample provision, followed by staff availability. CONCLUSION: These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.
BACKGROUND: Genetic data help detect preclinical Alzheimer's disease and target individuals for clinical trials, making genetic research engagement critical for continued advancement in dementia prevention and treatment. OBJECTIVE: To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers. METHODS: Data from the National Alzheimer's Coordinating Center Uniform Data Set (2009-2016) were obtained along with genetic sample availability. Logistic regression was used to assess independent contributions of demographic and clinical characteristics to the probability of sample provision. Sites contributing data completed a brief survey exploring regulatory and scientific issues related to genetic research engagement. RESULTS: Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, non-Hispanic ethnicity, normal cognition, and greater than 5 years of follow-up were associated with greater probability of availability. Sites identified refusals as the most frequent barrier to sample provision, followed by staff availability. CONCLUSION: These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.
Entities:
Keywords:
Alzheimer’s disease; genetic research; patient participation; surveys and zzm321990questionnaires
Authors: Ann C Hurley; Faan Rose Harvey; J Scott Roberts; Chantel Wilson-Chase; Stephanie Lloyd; Janalyn Prest; Margaret Lock; Kathy J Horvath; Robert C Green Journal: Am J Alzheimers Dis Other Demen Date: 2005 Nov-Dec Impact factor: 2.035
Authors: J Scott Roberts; L Adrienne Cupples; Norman R Relkin; Peter J Whitehouse; Robert C Green Journal: J Geriatr Psychiatry Neurol Date: 2005-12 Impact factor: 2.680
Authors: Donna T Chen; Donald L Rosenstein; Palaniappan Muthappan; Susan G Hilsenbeck; Franklin G Miller; Ezekiel J Emanuel; David Wendler Journal: Arch Intern Med Date: 2005-03-28
Authors: John C Morris; Sandra Weintraub; Helena C Chui; Jeffrey Cummings; Charles Decarli; Steven Ferris; Norman L Foster; Douglas Galasko; Neill Graff-Radford; Elaine R Peskind; Duane Beekly; Erin M Ramos; Walter A Kukull Journal: Alzheimer Dis Assoc Disord Date: 2006 Oct-Dec Impact factor: 2.703
Authors: Holly C Gooding; Erin L Linnenbringer; Jeffrey Burack; J Scott Roberts; Robert C Green; Barbara B Biesecker Journal: Patient Educ Couns Date: 2006-07-21
Authors: J Scott Roberts; Melissa Barber; Tamsen M Brown; L Adrienne Cupples; Lindsay A Farrer; Susan A LaRusse; Stephen G Post; Kimberly A Quaid; Lisa D Ravdin; Norman R Relkin; A Dessa Sadovnick; Peter J Whitehouse; John L Woodard; Robert C Green Journal: Genet Med Date: 2004 Jul-Aug Impact factor: 8.822
Authors: Miriam T Ashford; Rema Raman; Garrett Miller; Michael C Donohue; Ozioma C Okonkwo; Monica Rivera Mindt; Rachel L Nosheny; Godfrey A Coker; Ronald C Petersen; Paul S Aisen; Michael W Weiner Journal: Alzheimers Dement Date: 2022-02-25 Impact factor: 16.655
Authors: Miriam T Ashford; Joseph Eichenbaum; Tirzah Williams; Monica R Camacho; Juliet Fockler; Aaron Ulbricht; Derek Flenniken; Diana Truran; R Scott Mackin; Michael W Weiner; Rachel L Nosheny Journal: Alzheimers Dement (N Y) Date: 2020-05-26
Authors: Taylor Howell; Shilpa Gummadi; Chau Bui; Jessica Santhakumar; Kristen Knight; Erik D Roberson; Daniel Marson; Carol Chambless; Adam Gersteneker; Roy Martin; Richard Kennedy; Yue Zhang; John C Morris; Krista L Moulder; Connie Mayo; Maria Carroll; Yan Li; Ronald C Petersen; Nikki H Stricker; Rachel L Nosheny; Scott Mackin; Michael W Weiner Journal: Alzheimers Dement (Amst) Date: 2022-07-24
Authors: Juliet Fockler; Winnie Kwang; Miriam T Ashford; Derek Flenniken; Joshua Hwang; Diana Truran; R Scott Mackin; Chengshi Jin; Ruth O'Hara; Joachim F Hallmayer; Jerome A Yesavage; Michael W Weiner; Rachel L Nosheny Journal: Alzheimers Dement (N Y) Date: 2021-02-14