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：
CONTEMPORARY CLINICAL TRIALS | 2012年 / 33卷 / 01期
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
收藏
页码：3 / 4
页数：2
相关论文
共 50 条
  • [1] On informed patient consent
    Kayser, MC
    von Harder, Y
    Friemert, B
    Scherer, MA
    CHIRURG, 2006, 77 (02): : 139 - 149
  • [2] Immunotherapy and patient informed consent
    Pawliczak, Rafal
    ALERGOLOGIA POLSKA-POLISH JOURNAL OF ALLERGOLOGY, 2019, 6 (01) : 7 - 8
  • [3] Informed consent in patient care
    Radner, Wolfgang
    SPEKTRUM DER AUGENHEILKUNDE, 2020, 34 (5-6) : 132 - 136
  • [4] “Informed” Consent: An Audit of Informed Consent of Cesarean Section Evaluating Patient Education and Awareness
    Kirane A.G.
    Gaikwad N.B.
    Bhingare P.E.
    Mule V.D.
    The Journal of Obstetrics and Gynecology of India, 2015, 65 (6) : 382 - 385
  • [5] Patient satisfaction with an informed consent process
    Agre, P
    McKee, K
    Gargon, N
    Kurtz, RC
    CANCER PRACTICE, 1997, 5 (03) : 162 - 167
  • [6] Patient satisfaction and informed consent for surgery
    Hallock, Jennifer L.
    Rios, Rebeca
    Handa, Victoria L.
    AMERICAN JOURNAL OF OBSTETRICS AND GYNECOLOGY, 2017, 217 (02) : 181.e1 - 181.e7
  • [7] Sublingual immunotherapy and patient informed consent
    Pawliczak, Rafal
    ALERGOLOGIA POLSKA-POLISH JOURNAL OF ALLERGOLOGY, 2019, 6 (02) : 43 - 48
  • [8] Informed consent and registry-based research - the case of the Danish circumcision registry
    Thomas Ploug
    Søren Holm
    BMC Medical Ethics, 18
  • [9] Informed consent and registry-based research - the case of the Danish circumcision registry
    Ploug, Thomas
    Holm, Soren
    BMC MEDICAL ETHICS, 2017, 18
  • [10] Community-engaged training in informed consent
    Markman, Kris M.
    Weicker, Noelle P.
    Klein, Andreas K.
    Sege, Robert
    JOURNAL OF CLINICAL AND TRANSLATIONAL SCIENCE, 2023, 7 (01)
12345