Detalhe da pesquisa
1.
Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.
Clin Trials
; 21(1): 73-84, 2024 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-37962219
2.
Recommendations for assessing appearance concerns related to plexiform and cutaneous neurofibromas in neurofibromatosis 1 clinical trials.
Clin Trials
; 21(1): 6-17, 2024 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-38140900
3.
Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds.
Am J Med Genet A
; 191(8): 2045-2056, 2023 08.
Artigo
em Inglês
| MEDLINE | ID: mdl-37264986
4.
Indicators of health in Down syndrome: A virtual focus group study with patients and their parents.
J Appl Res Intellect Disabil
; 36(2): 354-365, 2023 Mar.
Artigo
em Inglês
| MEDLINE | ID: mdl-36624557
5.
Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network.
J Gen Intern Med
; 37(Suppl 1): 33-41, 2022 04.
Artigo
em Inglês
| MEDLINE | ID: mdl-35349028
6.
Understanding barriers to diagnosis in a rare, genetic disease: Delays and errors in diagnosing schwannomatosis.
Am J Med Genet A
; 188(9): 2672-2683, 2022 09.
Artigo
em Inglês
| MEDLINE | ID: mdl-35678462
7.
Impact of the coronavirus pandemic on mental health and health care in adults with neurofibromatosis: Patient perspectives from an online survey.
Am J Med Genet A
; 188(1): 71-82, 2022 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-34536052
8.
Advancing neurofibromatosis and schwannomatosis clinical trial design: Consensus recommendations from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration.
Clin Trials
; 21(1): 3-5, 2024 02.
Artigo
em Inglês
| MEDLINE | ID: mdl-37776044
9.
Health literacy assessment in adults with neurofibromatosis: electronic and short-form measurement using FCCHL and Health LiTT.
J Neurooncol
; 136(2): 335-342, 2018 Jan.
Artigo
em Inglês
| MEDLINE | ID: mdl-29119424
10.
Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis.
BMC Health Serv Res
; 18(1): 668, 2018 Aug 29.
Artigo
em Inglês
| MEDLINE | ID: mdl-30157837
11.
First report of factors associated with satisfaction in patients with neurofibromatosis.
Am J Med Genet A
; 173(3): 671-677, 2017 03.
Artigo
em Inglês
| MEDLINE | ID: mdl-28211981
12.
First use of patient reported outcomes measurement information system (PROMIS) measures in adults with neurofibromatosis.
J Neurooncol
; 131(2): 413-419, 2017 01.
Artigo
em Inglês
| MEDLINE | ID: mdl-27900643
13.
Quality of life among children and adolescents with neurofibromatosis 1: a systematic review of the literature.
J Neurooncol
; 122(2): 219-28, 2015 Apr.
Artigo
em Inglês
| MEDLINE | ID: mdl-25663248
14.
Examining perceived cancer risk among patients with neurofibromatosis type 1.
J Neurooncol
; 122(1): 127-33, 2015 Mar.
Artigo
em Inglês
| MEDLINE | ID: mdl-25559686
15.
Relationship between whole-body tumor burden, clinical phenotype, and quality of life in patients with neurofibromatosis.
Am J Med Genet A
; 164A(6): 1431-7, 2014 Jun.
Artigo
em Inglês
| MEDLINE | ID: mdl-24664633
16.
The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study.
J Neurooncol
; 120(1): 103-9, 2014 Oct.
Artigo
em Inglês
| MEDLINE | ID: mdl-25022450
17.
Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature.
J Neurooncol
; 114(3): 257-62, 2013 Sep.
Artigo
em Inglês
| MEDLINE | ID: mdl-23817811
18.
Understanding relationships between autism, intelligence, and epilepsy: a cross-disorder approach.
Dev Med Child Neurol
; 55(2): 146-153, 2013 Feb.
Artigo
em Inglês
| MEDLINE | ID: mdl-23205844
19.
Ten-Year Follow-up of Internal Neurofibroma Growth Behavior in Adult Patients With Neurofibromatosis Type 1 Using Whole-Body MRI.
Neurology
; 100(7): e661-e670, 2023 02 14.
Artigo
em Inglês
| MEDLINE | ID: mdl-36332985
20.
Clinical features of schwannomatosis: a retrospective analysis of 87 patients.
Oncologist
; 17(10): 1317-22, 2012.
Artigo
em Inglês
| MEDLINE | ID: mdl-22927469