Detalhe da pesquisa
1.
Neurodevelopmental copy-number variants: A roadmap to improving outcomes by uniting patient advocates, researchers, and clinicians for collective impact.
Am J Hum Genet
; 109(8): 1353-1365, 2022 08 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-35931048
2.
Long COVID still has no cure - so these patients are turning to research.
Nature
; 628(8006): 26-28, 2024 Apr.
Artigo
em Inglês
| MEDLINE | ID: mdl-38565658
3.
Meaningful Endpoints for Idiopathic Pulmonary Fibrosis (IPF) Clinical Trials: Emphasis on 'Feels, Functions, Survives'. Report of a Collaborative Discussion in a Symposium with Direct Engagement from Representatives of Patients, Investigators, the National Institutes of Health, a Patient Advocacy Organization, and a Regulatory Agency.
Am J Respir Crit Care Med
; 209(6): 647-669, 2024 Mar 15.
Artigo
em Inglês
| MEDLINE | ID: mdl-38174955
4.
Advocacy Connection Team-Now educational program for headache fellows and patients/caregivers: Assessment of educational objectives.
Headache
; 64(4): 374-379, 2024 Apr.
Artigo
em Inglês
| MEDLINE | ID: mdl-38523478
5.
'The best way to get it right is to listen to us' - autistic people argue for a stronger voice in research.
Nature
; 617(7960): 238-241, 2023 05.
Artigo
em Inglês
| MEDLINE | ID: mdl-37165246
6.
Engaging healthcare professionals and patient representatives in the development of a quality model for hospitals: a mixed-method study.
Int J Qual Health Care
; 36(1)2024 Jan 25.
Artigo
em Inglês
| MEDLINE | ID: mdl-38183266
7.
'They don't think I can do it': Experiences of self-advocates, employment specialists, and employers on employment of adults with intellectual disability.
J Appl Res Intellect Disabil
; 37(3): e13231, 2024 May.
Artigo
em Inglês
| MEDLINE | ID: mdl-38561915
8.
The TTP specialist nurse: an advocate for patients and professionals.
Br J Nurs
; 33(6): 284-290, 2024 Mar 21.
Artigo
em Inglês
| MEDLINE | ID: mdl-38512783
9.
A Model of Advocacy to Inform Action.
J Gen Intern Med
; 38(1): 208-212, 2023 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-36323827
10.
Core protocol development for phase 2/3 clinical trials in the leukodystrophy vanishing white matter: a consensus statement by the VWM consortium and patient advocates.
BMC Neurol
; 23(1): 305, 2023 Aug 17.
Artigo
em Inglês
| MEDLINE | ID: mdl-37592248
11.
Current status of African pediatric oncology education efforts aligned with the Global Initiative for Childhood Cancer.
Pediatr Hematol Oncol
; 40(3): 224-241, 2023 Apr.
Artigo
em Inglês
| MEDLINE | ID: mdl-36083006
12.
Training Community African American and Hispanic/Latino/a Advocates on Prostate Cancer (PCa): a Multicultural and Bicoastal Approach.
J Cancer Educ
; 38(5): 1719-1727, 2023 10.
Artigo
em Inglês
| MEDLINE | ID: mdl-37452225
13.
Predictors of patient self-advocacy among patients with chronic heart failure.
Appl Nurs Res
; 72: 151694, 2023 08.
Artigo
em Inglês
| MEDLINE | ID: mdl-37423677
14.
Barriers and facilitators to multidimensional symptom management in palliative care: A focus group study among patient representatives and clinicians.
Palliat Support Care
; 21(4): 616-627, 2023 08.
Artigo
em Inglês
| MEDLINE | ID: mdl-36177886
15.
Self-advocates with Down syndrome research the lived experiences of COVID-19 lockdowns in Aotearoa New Zealand.
J Appl Res Intellect Disabil
; 36(2): 300-309, 2023 Mar.
Artigo
em Inglês
| MEDLINE | ID: mdl-36458448
16.
Persistent under-representation of female patients in United States trials of common vascular diseases from 2008 to 2020.
J Vasc Surg
; 75(1): 30-36, 2022 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-34438003
17.
Patient Advocacy Assessment in the Medicine Clerkship: A Qualitative Study of Definition, Context, and Impact.
J Gen Intern Med
; 37(10): 2489-2495, 2022 08.
Artigo
em Inglês
| MEDLINE | ID: mdl-35132554
18.
Choosing Wisely in Adult Hospital Medicine: Co-creation of New Recommendations for Improved Healthcare Value by Clinicians and Patient Advocates.
J Gen Intern Med
; 37(10): 2454-2461, 2022 08.
Artigo
em Inglês
| MEDLINE | ID: mdl-35668237
19.
Facilitators and barriers to reducing chemotherapy for early-stage breast cancer: a qualitative analysis of interviews with patients and patient advocates.
BMC Cancer
; 22(1): 141, 2022 Feb 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-35120494
20.
The Preeclampsia Foundation: the voice and views of the patient and her family.
Am J Obstet Gynecol
; 226(2S): S1254-S1264.e1, 2022 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-34479720