Informed consent and patient registry for the rare disease community: Editorial

被引：4

作者：

Grady, Christine ^{[2
]}

Rubinstein, Yaffa R. ^{[1
]}

Groft, Stephen C. ^{[1
]}

机构：

[1] NIH, Off Rare Dis Res, Bethesda, MD 20892 USA

[2] NIH, Ctr Clin, Dept Bioeth, Head Sect Human Subjects Res, Bethesda, MD 20892 USA

来源：

关键词：

Informed consent; Patient registry; Rare disease; Rare disease community; Patient advocacy group;

D O I：

10.1016/j.cct.2011.10.005

中图分类号：

R-3 [医学研究方法]; R3 [基础医学];

学科分类号：

1001 ;

摘要：

引用

页码：3 / 4

页数：2

共 50 条

[1] Patient, doctor, disease, and informed consent
Pela, Riccardo
MULTIDISCIPLINARY RESPIRATORY MEDICINE, 2011, 6 (01) : 8 - 9
[2] Informed consent process for patient participation in rare disease registries linked to biorepositories
Rubinstein, Yaffa R.
Groft, Stephen C.
Chandros, Sara Hull
Kaneshiro, Julie
Karp, Barbara
Lockhart, Nicole C.
Marshall, Patricia A.
Moxley, Richard T., III
Pollen, Geraldine B.
Miller, Vanessa Rangel
Schwartz, Jack
CONTEMPORARY CLINICAL TRIALS, 2012, 33 (01) : 5 - 11
[3] PATIENT CONSENT INFORMED CONSENT
ELL, PJ
EUROPEAN JOURNAL OF NUCLEAR MEDICINE, 1993, 20 (06): : 461 - 464
[4] On informed patient consent
Kayser, MC
von Harder, Y
Friemert, B
Scherer, MA
CHIRURG, 2006, 77 (02): : 139 - 149
[5] Informed consent from the community?
Vetter, N
JOURNAL OF PUBLIC HEALTH MEDICINE, 2001, 23 (03): : 171 - 172
[6] The patient, the doctor and the family as aspects of community: New models for informed consent
Mendel, Joy
MONASH BIOETHICS REVIEW, 2007, 26 (1-2) : 68 - 78
[7] INFORMED CONSENT OF BEAUMONTS PATIENT
BEAUMONT, W
LOCKHART, JD
HOSPITAL PRACTICE, 1978, 13 (05): : 29 - &
[8] PATIENT RECALL OF INFORMED CONSENT
KENNEDY, BJ
LILLEHAUGEN, A
MEDICAL AND PEDIATRIC ONCOLOGY, 1979, 7 (02): : 173 - 178
[9] INFORMED CONSENT FOR TERMINAL PATIENT
RUTLEDGE, TA
BAYLOR LAW REVIEW, 1975, 27 (01) : 111 - 121
[10] Patient verbalization and informed consent
Rorabeck, CH
CANADIAN JOURNAL OF SURGERY, 1997, 40 (02) : 86 - 86