Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants.

Alzheimer Disease / genetics Databases, Genetic Humans Patient Participation Research Surveys and Questionnaires
Alzheimer’s disease genetic research patient participation surveys and questionnaires

Journal

Journal of Alzheimer's disease : JAD
ISSN: 1875-8908
Titre abrégé: J Alzheimers Dis
Pays: Netherlands
ID NLM: 9814863

Informations de publication

Date de publication:
2019
Historique:
pubmed: 9 4 2019
medline: 10 9 2020
entrez: 9 4 2019
Statut: ppublish

Résumé

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. To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers. 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. 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. These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.

Sections du résumé

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.

Identifiants

DOI: 10.3233/JAD-181159 PMID: 30958359 PMC: PMC6513699
pubmed: 30958359
pii: JAD181159
doi: 10.3233/JAD-181159
pmc: PMC6513699
mid: NIHMS1025106
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

IM

Pagination

123-133

Subventions

Organisme : NIA NIH HHS
ID : P30 AG013854
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG053760
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG010124
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG023501
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005142
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005131
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG010133
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG016574
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005146
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG035982
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG008702
Pays : United States
Organisme : NIA NIH HHS
ID : U01 AG016976
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG008051
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005681
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG013846
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG047270
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005136
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG049638
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG012300
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG016573
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG047266
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005134
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG008017
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG010161
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG025688
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005133
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005138
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG047366
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG010129
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG019610
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG028383
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG033514
Pays : United States

Références

Am J Med Genet. 2001 Sep 15;103(1):16-23
pubmed: 11562929
Genet Test. 2003 Spring;7(1):39-44
pubmed: 12820701
Genet Med. 2004 Jul-Aug;6(4):197-203
pubmed: 15266207
Arch Intern Med. 2005 Mar 28;165(6):652-5
pubmed: 15795341
Risk Anal. 2005 Apr;25(2):397-404
pubmed: 15876213
J Geriatr Psychiatry Neurol. 2005 Dec;18(4):250-5
pubmed: 16306249
Am J Alzheimers Dis Other Demen. 2005 Nov-Dec;20(6):374-81
pubmed: 16396443
Patient Educ Couns. 2006 Dec;64(1-3):259-67
pubmed: 16860524
J Alzheimers Dis. 2006;9(3 Suppl):409-15
pubmed: 16914879
Alzheimer Dis Assoc Disord. 2006 Oct-Dec;20(4):210-6
pubmed: 17132964
Alzheimer Dis Assoc Disord. 2008 Jan-Mar;22(1):94-7
pubmed: 18317253
Cancer Epidemiol Biomarkers Prev. 2008 Jun;17(6):1440-51
pubmed: 18559560
Genet Test. 2008 Sep;12(3):381-6
pubmed: 18666860
Alzheimers Dement. 2008 Nov;4(6):406-13
pubmed: 19012865
Health Aff (Millwood). 2010 Jan-Feb;29(1):102-8
pubmed: 20048367
Genet Med. 2010 Feb;12(2):116-21
pubmed: 20098329
Genet Med. 2010 Apr;12(4):219-27
pubmed: 20139767
J Genet Couns. 2011 Dec;20(6):650-9
pubmed: 21656311
Clin Genet. 2011 Nov;80(5):407-14
pubmed: 21696382
Am J Med Genet A. 2011 Dec;155A(12):2982-90
pubmed: 22065592
Nat Rev Neurol. 2013 Jan;9(1):54-8
pubmed: 23183885
Lancet Neurol. 2013 Jan;12(1):92-104
pubmed: 23237904
Patient Educ Couns. 2014 Feb;94(2):170-9
pubmed: 24316056
Am J Public Health. 2014 Feb;104(2):e16-31
pubmed: 24328648
BMC Med Res Methodol. 2014 Mar 25;14:42
pubmed: 24669751
Alzheimers Dement. 2015 Oct;11(10):1222-30
pubmed: 25499536
Genome Med. 2015 Jan 31;7(1):10
pubmed: 25642295
Public Health Genomics. 2015;18(4):216-24
pubmed: 26087778
J Alzheimers Dis. 2015;50(1):71-6
pubmed: 26639973
Gerontologist. 2017 Aug 1;57(4):719-734
pubmed: 26935242
J Alzheimers Dis. 2017;60(1):1-10
pubmed: 28731440
J Prev Alzheimers Dis. 2017;4(4):242-246
pubmed: 29181489
Am J Bioeth. 2018 Apr;18(4):3-20
pubmed: 29621457
Neuroimage Clin. 2017 Sep 21;16:659-667
pubmed: 29868439
Am J Hum Genet. 1994 Oct;55(4):626-37
pubmed: 7942840

Auteurs

Shoshana H Bardach (SH)

University of Kentucky, Lexington, KY, USA.

Gregory A Jicha (GA)

University of Kentucky, Lexington, KY, USA.

Shama Karanth (S)

University of Kentucky, Lexington, KY, USA.

Xuan Zhang (X)

University of Kentucky, Lexington, KY, USA.

Erin L Abner (EL)

University of Kentucky, Lexington, KY, USA.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female

Evaluation of Low-Value Services Across Major Medicare Advantage Insurers and Traditional Medicare.

Ciara Duggan, Adam L Beckman, Ishani Ganguli et al.
1.00
Humans United States Aged Cross-Sectional Studies Medicare Part C

Effectiveness of Virtual Yoga for Chronic Low Back Pain: A Randomized Clinical Trial.

Hallie Tankha, Devyn Gaskins, Amanda Shallcross et al.
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH

questionsmedicales.fr › Troubles mentaux › Troubles neurocognitifs › Démence › Maladie d'Alzheimer › Genetic Sample Provision Among National...
questionsmedicales.fr › Sciences de l'information › Mémorisation et recherche des informations › Bases de données comme sujet › Bases de données factuelles › Bases de données génétiques › Genetic Sample Provision Among National...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Genetic Sample Provision Among National...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Prestations des soins de santé › Attitude envers la santé › Adhésion et observance thérapeutiques › Acceptation des soins par les patients › Participation des patients › Genetic Sample Provision Among National...
questionsmedicales.fr › Disciplines des sciences naturelles › Science › Recherche › Genetic Sample Provision Among National...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Genetic Sample Provision Among National...