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Clinical Features of Schwannomatosis: A Retrospective Analysis of 87 Patients

The oncologist (Dayton, Ohio), 2012-10, Vol.17 (10), p.1317-1322

2012

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Efficacy and Biomarker Study of Bevacizumab for Hearing Loss Resulting From Neurofibromatosis Type 2-Associated Vestibular Schwannomas

Journal of clinical oncology, 2016-05, Vol.34 (14), p.1669-1675

2016

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Quantitative assessment of whole-body tumor burden in adult patients with neurofibromatosis

PloS one, 2012-04, Vol.7 (4), p.e35711-e35711

2012

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Bevacizumab treatment for meningiomas in NF2: a retrospective analysis of 15 patients

PloS one, 2013-03, Vol.8 (3), p.e59941-e59941

2013

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Long-term toxicity of bevacizumab therapy in neurofibromatosis 2 patients

Cancer chemotherapy and pharmacology, 2014-06, Vol.73 (6), p.1197-1204

2014

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The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research

Orphanet journal of rare diseases, 2021-02, Vol.16 (1), p.61-61, Article 61

2021

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Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists

Orphanet journal of rare diseases, 2022-02, Vol.17 (1), p.44-44, Article 44

2022

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Understanding relationships between autism, intelligence, and epilepsy: a cross‐disorder approach

Developmental medicine and child neurology, 2013-02, Vol.55 (2), p.146-153

2013

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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 services research, 2018-08, Vol.18 (1), p.668-668, Article 668

2018

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Natural history of vestibular schwannoma growth and hearing decline in newly diagnosed neurofibromatosis type 2 patients

Otology & neurotology, 2014-01, Vol.35 (1), p.e50

2014

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Outcomes of preimplantation genetic diagnosis in neurofibromatosis type 1

Fertility and sterility, 2015-03, Vol.103 (3), p.761-768.e1

2015

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Pregnancy complications in women with rare tumor suppressor syndromes affecting central and peripheral nervous system

American journal of obstetrics and gynecology, 2015-07, Vol.213 (1), p.108-109

2015

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Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT

Neurology, 2016-08, Vol.87 (8), p.806

2016

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Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials

Neurology, 2021-08, Vol.97 (7 Suppl 1), p.S64

2021

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Bevacizumab for progressive vestibular schwannoma in neurofibromatosis type 2: a retrospective review of 31 patients

Otology & neurotology, 2012-08, Vol.33 (6), p.1046

2012

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Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature

Journal of neuro-oncology, 2013-09, Vol.114 (3), p.257-262

2013

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“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness

Social science & medicine (1982), 2021-09, Vol.284, p.114211, Article 114211

2021

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Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network

Journal of general internal medicine : JGIM, 2022-04, Vol.37 (Suppl 1), p.33-41

2022

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Indicators of health in Down syndrome: A virtual focus group study with patients and their parents

Journal of applied research in intellectual disabilities, 2023-03, Vol.36 (2), p.354-365

2023

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Advancing neurofibromatosis and schwannomatosis clinical trial design: Consensus recommendations from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration

Clinical trials (London, England), 2024-02, Vol.21 (1), p.3-5

2024

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Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Neurology, 2021-08, Vol.97 (7 Suppl 1), p.S50

2021

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Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis

Patient education and counseling, 2021-04, Vol.104 (4), p.808-814

2021

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Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS

Neurology, 2021-08, Vol.97 (7 Suppl 1), p.S4

2021

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Ten-Year Follow-up of Internal Neurofibroma Growth Behavior in Adult Patients With Neurofibromatosis Type 1 Using Whole-Body MRI

Neurology, 2023-02, Vol.100 (7), p.e661

2023

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The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study

Journal of neuro-oncology, 2014-10, Vol.120 (1), p.103-109

2014

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Clinical Features of Schwannomatosis: A Retrospective Analysis of 87 Patients

Efficacy and Biomarker Study of Bevacizumab for Hearing Loss Resulting From Neurofibromatosis Type 2-Associated Vestibular Schwannomas

Quantitative assessment of whole-body tumor burden in adult patients with neurofibromatosis

Bevacizumab treatment for meningiomas in NF2: a retrospective analysis of 15 patients

Long-term toxicity of bevacizumab therapy in neurofibromatosis 2 patients

The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research

Awareness and agreement with neurofibromatosis care guidelines among U.S. neurofibromatosis specialists

Understanding relationships between autism, intelligence, and epilepsy: a cross‐disorder approach

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

Natural history of vestibular schwannoma growth and hearing decline in newly diagnosed neurofibromatosis type 2 patients

Outcomes of preimplantation genetic diagnosis in neurofibromatosis type 1

Pregnancy complications in women with rare tumor suppressor syndromes affecting central and peripheral nervous system

Mind-body therapy via videoconferencing in patients with neurofibromatosis: An RCT

Patient Report of Hearing in Neurofibromatosis Type 2: Recommendations for Clinical Trials

Bevacizumab for progressive vestibular schwannoma in neurofibromatosis type 2: a retrospective review of 31 patients

Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature

“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness

Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network

Indicators of health in Down syndrome: A virtual focus group study with patients and their parents

Advancing neurofibromatosis and schwannomatosis clinical trial design: Consensus recommendations from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration

Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials

Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis

Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS

Ten-Year Follow-up of Internal Neurofibroma Growth Behavior in Adult Patients With Neurofibromatosis Type 1 Using Whole-Body MRI

The relaxation response resiliency program (3RP) in patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis: results from a pilot study

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