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Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights.
Walter, Sarah; Taylor, Angela; Tyrone, Jamie; Langer, Sara; Pagan, John-Richard; Hummel, Cynthia Huling; Wheaton, Bonnie M; Zallen, Doris T; Rosen, Allyson C.
Afiliación
  • Walter S; Alzheimer's Therapeutic Research Institute, University of Southern California, San Diego, CA, USA.
  • Taylor A; Lewy Body Dementia Association, Lilburn, GA, USA.
  • Tyrone J; Advisory Group on Risk Evidence Education for Dementia Stakeholder and Patient Sub-Committee.
  • Langer S; Advisory Group on Risk Evidence Education for Dementia Stakeholder and Patient Sub-Committee.
  • Pagan JR; Advisory Group on Risk Evidence Education for Dementia Stakeholder and Patient Sub-Committee.
  • Hummel CH; Advisory Group on Risk Evidence Education for Dementia Stakeholder and Patient Sub-Committee.
  • Wheaton BM; Advisory Group on Risk Evidence Education for Dementia Stakeholder and Patient Sub-Committee.
  • Zallen DT; Virginia Tech, Blacksburg, VA, USA.
  • Rosen AC; Palo Alto VAMC, Palo Alto, CA, USA.
J Alzheimers Dis ; 90(3): 945-952, 2022.
Article en En | MEDLINE | ID: mdl-36278354
This Study Participant's Bill of Rights is a call to action for researchers in Alzheimer's disease and related dementias (ADRD) to proactively design clinical studies that provide the option for research participants to learn their individual research results if they choose, and in a manner that ensures study integrity. This Bill of Rights was crafted by a committee of study participants, care partners, representatives of dementia advocacy organizations, and other stakeholders in dementia research for the Advisory Group on Risk Education for Dementia (AGREEDementia). The framework developed by the Multi-Regional Clinical Trials (MRCT) Return of Individual Research Results provides a useful context for researchers to plan their studies and disclosure.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Enfermedad de Alzheimer Límite: Humans Idioma: En Revista: J Alzheimers Dis Asunto de la revista: GERIATRIA / NEUROLOGIA Año: 2022 Tipo del documento: Article País de afiliación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Enfermedad de Alzheimer Límite: Humans Idioma: En Revista: J Alzheimers Dis Asunto de la revista: GERIATRIA / NEUROLOGIA Año: 2022 Tipo del documento: Article País de afiliación: Estados Unidos
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