Perceptions of patients with inflammatory bowel diseases on biobanking

Inflammatory Bowel Diseases

Volumn 21, Issue 1, 2015, Pages 132-138

  Long, Millie D ^a   Cadigan, R Jean ^a   Cook, Suzanne F ^b   Haldeman, Kaaren ^b   Kuczynski, Kriste ^a   Sandler, Robert S ^a   Martin, Christopher F ^a   Chen, Wenli ^a   Kappelman, Michael D ^a  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^b GLAXOSMITHKLINE   (United States)

Author keywords

Biobanks; Inflammatory bowel disease; Sample donation

Indexed keywords

CORTICOSTEROID; IMMUNOMODULATING AGENT; MESALAZINE; TUMOR NECROSIS FACTOR INHIBITOR;

ADULT; ARTICLE; BIOBANKING; BIVARIATE ANALYSIS; BLOOD DONOR; CLINICAL ASSESSMENT; CLINICAL RESEARCH; COHORT ANALYSIS; CONFIDENTIALITY; CONTROLLED STUDY; CORTICOSTEROID THERAPY; CROHN DISEASE; DISEASE ACTIVITY; DISEASE COURSE; DONOR; DRUG INDUSTRY; FECES; FECES DONATION; FEMALE; GOVERNMENT; HEALTH BELIEF; HEALTH CARE FINANCING; HEALTH INSURANCE; HEALTH SURVEY; HUMAN; INFORMED CONSENT; MAJOR CLINICAL STUDY; MALE; MOTIVATION; ORGAN PRESERVATION; PATIENT ATTITUDE; PATIENT PARTICIPATION; PATIENT PREFERENCE; PRIORITY JOURNAL; REMISSION; RISK BENEFIT ANALYSIS; RISK FACTOR; SALIVA; STATISTICS; STORAGE; TELEPHONE INTERVIEW; ULCERATIVE COLITIS; ATTITUDE TO HEALTH; COLITIS, ULCERATIVE; CONSUMER; CROSS-SECTIONAL STUDY; DEMOGRAPHY; FOLLOW UP; HEALTH CARE FACILITY; MEDICAL RESEARCH; PERCEPTION; PSYCHOLOGY; STATISTICS AND NUMERICAL DATA;

ADULT; ATTITUDE TO HEALTH; BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; COLITIS, ULCERATIVE; CONSUMER PARTICIPATION; CROHN DISEASE; CROSS-SECTIONAL STUDIES; DEMOGRAPHY; FEMALE; FOLLOW-UP STUDIES; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; PERCEPTION;

EID: 84925769705     PISSN: 10780998     EISSN: 15364844     Source Type: Journal    
DOI: 10.1097/MIB.0000000000000263     Document Type: Article

References (21)

1. Shaw D, Elger B, Colledge F. What is a biobank? Differing definitions among biobank stakeholders. Clin Genet. 2014;85:223-227.
2. Swiss Academy of Medical Sciences. Biobanks: Obtainment, Preservation and Utilisation of Human Biological Material. Basel: Swiss Academy of Medical Sciences; 2006.
3. Trauth JM, Musa D, Siminoff L, et al. Public attitudes regarding willingness to participate in medical research studies. J Health Soc Policy. 2000; 12:23-43.
4. Molodecky NA, Soon IS, Rabi DM, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012;142:46-54 e42; quiz e30.
5. Ananthakrishnan AN. Environmental triggers for inflammatory bowel disease. Curr Gastroenterol Rep. 2013;15:302.
6. Bernstein CN, Wajda A, Svenson LW, et al. The epidemiology of inflammatory bowel disease in Canada: a population-based study. Am J Gastroenterol. 2006;101:1559-1568.
7. Denson LA, Long MD, McGovern DP, et al. Challenges in IBD research: update on progress and prioritization of the CCFA's research agenda. Inflamm Bowel Dis. 2013;19:677-682.
8. Long MD, Kappelman MD, Martin CF, et al. Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results. Inflamm Bowel Dis. 2012;18:2099-2106.
9. Ananthakrishnan AN, Long MD, Martin CF, et al. Sleep disturbance and risk of active disease in patients with Crohn's disease and ulcerative colitis. Clin Gastroenterol Hepatol. 2013;11:965-971.
10. Long MD, Kappelman MD, Martin CF, et al. Risk factors for depression in the elderly inflammatory bowel disease population. J Crohns Colitis. 2014;8:113-119.
11. Miles M, Huberman A, Saldana J. Qualitative Data Analysis: A Methods Sourcebook. In. Thousand Oaks, CA: Sage; 2013.
12. Henderson GE, Cadigan RJ, Edwards TP, et al. Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med. 2013;5:3.
13. Henderson GE, Edwards TP, Cadigan RJ, et al. Stewardship practices of U.S. biobanks. Sci Transl Med. 2013;5:215cm7.
14. Rahm AK, Wrenn M, Carroll NM, et al. Biobanking for research: a survey of patient population attitudes and understanding. J Community Genet. 2013;4:445-450.
15. Gao W, Ma GX, Tan Y, et al. Factors associated with willingness to participate in biospecimen research among Chinese Americans. Biopreserv Biobank. 2014;12:131-138.
16. Braun KL, Tsark JU, Powers A, et al. Cancer patient perceptions about biobanking and preferred timing of consent. Biopreserv Biobank. 2014; 12:106-112.
17. Ahram M, Othman A, Shahrouri M, et al. Factors influencing public participation in biobanking. Eur J Hum Genet. 2014;22:445-451.
18. Colledge F, Persson K, Elger B, et al. Sample and data sharing barriers in biobanking: consent, committees, and compromises. Ann Diagn Pathol. 2014;18:78-81.
19. Kaye J, Whitley EA, Lund D, et al. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. [published online ahead of print May 7, 2014]. doi: 10.1038/ejhg.2014.71.
20. Randell RL, Long MD, Cook SF, et al. Validation of an internet-based cohort of inflammatory bowel disease (CCFA partners). Inflamm Bowel Dis. 2014;20:541-544.
21. Johnsson L, Helgesson G, Rafnar T, et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet. 2010;18:1261-1264.