Neurofibromatosis Symposium Evaluation

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Patient

Parent/Family Member

Provider (MD, DO, PA, NP)

Genetic Counselor

Researcher

Other not listed

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Please rate the degree to which the symposium objectives were met: *

	Strongly Agree	Agree	Disagree	Strongly Disagree	NA
Describe current themes in clinical research of treatments for NF1 and NF2.	Describe current themes in clinical research of treatments for NF1 and NF2. - Strongly Agree	Describe current themes in clinical research of treatments for NF1 and NF2. - Agree	Describe current themes in clinical research of treatments for NF1 and NF2. - Disagree	Describe current themes in clinical research of treatments for NF1 and NF2. - Strongly Disagree	Describe current themes in clinical research of treatments for NF1 and NF2. - NA
Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1.	Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1. - Strongly Agree	Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1. - Agree	Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1. - Disagree	Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1. - Strongly Disagree	Illustrate when neurocognitive testing, growth hormone therapy, and dermatologic interventions are appropriate for children with NF1. - NA
Recognize the varied experiences of patients affected with NF2-related schwannomatosis.	Recognize the varied experiences of patients affected with NF2-related schwannomatosis. - Strongly Agree	Recognize the varied experiences of patients affected with NF2-related schwannomatosis. - Agree	Recognize the varied experiences of patients affected with NF2-related schwannomatosis. - Disagree	Recognize the varied experiences of patients affected with NF2-related schwannomatosis. - Strongly Disagree	Recognize the varied experiences of patients affected with NF2-related schwannomatosis. - NA
Identify opportunities to work with legislators to advocate for people affected by rare diseases.	Identify opportunities to work with legislators to advocate for people affected by rare diseases. - Strongly Agree	Identify opportunities to work with legislators to advocate for people affected by rare diseases. - Agree	Identify opportunities to work with legislators to advocate for people affected by rare diseases. - Disagree	Identify opportunities to work with legislators to advocate for people affected by rare diseases. - Strongly Disagree	Identify opportunities to work with legislators to advocate for people affected by rare diseases. - NA

Please rate the following: *

	Strongly Agree	Agree	Disagree	Strongly Disagree	NA
Current themes in clinical research of NF1 and NF2 were discussed	Current themes in clinical research of NF1 and NF2 were discussed - Strongly Agree	Current themes in clinical research of NF1 and NF2 were discussed - Agree	Current themes in clinical research of NF1 and NF2 were discussed - Disagree	Current themes in clinical research of NF1 and NF2 were discussed - Strongly Disagree	Current themes in clinical research of NF1 and NF2 were discussed - NA
The time I spent was meaningful	The time I spent was meaningful - Strongly Agree	The time I spent was meaningful - Agree	The time I spent was meaningful - Disagree	The time I spent was meaningful - Strongly Disagree	The time I spent was meaningful - NA
The symposium was well organized	The symposium was well organized - Strongly Agree	The symposium was well organized - Agree	The symposium was well organized - Disagree	The symposium was well organized - Strongly Disagree	The symposium was well organized - NA
Presentations were free of commercial bias	Presentations were free of commercial bias - Strongly Agree	Presentations were free of commercial bias - Agree	Presentations were free of commercial bias - Disagree	Presentations were free of commercial bias - Strongly Disagree	Presentations were free of commercial bias - NA

Did the speaker cover their learning objective(s)?

	Yes	No	NA/did not attend
Introduction to NF1 with Kati Anderson, MD	Introduction to NF1 with Kati Anderson, MD - Yes	Introduction to NF1 with Kati Anderson, MD - No	Introduction to NF1 with Kati Anderson, MD - NA/did not attend
Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - Yes	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - No	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - NA/did not attend
Patient Care: Growth hormone in NF1 with Sarah Murphy, DO	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - Yes	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - No	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - NA/did not attend
Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - Yes	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - No	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - NA/did not attend
NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - Yes	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - No	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - NA/did not attend
NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - Yes	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - No	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - NA/did not attend
NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - Yes	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - No	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - NA/did not attend
Patient Resources with Erica Berg & Dale Berg	Patient Resources with Erica Berg & Dale Berg - Yes	Patient Resources with Erica Berg & Dale Berg - No	Patient Resources with Erica Berg & Dale Berg - NA/did not attend
Schwannomatosis (SWN) Research with Kim Ostrow, PhD	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - Yes	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - No	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - NA/did not attend
Genetics: NF2 and genetic testing with Lisa Schimmenti, MD	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - Yes	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - No	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - NA/did not attend
Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - Yes	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - No	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - NA/did not attend
Working with Legislature: Rare diseases	Working with Legislature: Rare diseases - Yes	Working with Legislature: Rare diseases - No	Working with Legislature: Rare diseases - NA/did not attend

What presentations did you find the most helpful? Select all that apply

Did each speaker address their COI or lack of COIs prior to their presentation? *

	Yes	No	NA/did not attend
Introduction to NF1 with Kati Anderson, MD	Introduction to NF1 with Kati Anderson, MD - Yes	Introduction to NF1 with Kati Anderson, MD - No	Introduction to NF1 with Kati Anderson, MD - NA/did not attend
Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - Yes	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - No	Patient Care: Neurocognitive testing in children with CN1 with Jeremy Alden, PhD, LP - NA/did not attend
Patient Care: Growth hormone in NF1 with Sarah Murphy, DO	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - Yes	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - No	Patient Care: Growth hormone in NF1 with Sarah Murphy, DO - NA/did not attend
Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - Yes	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - No	Patient Care: Dermatologic management of neurofibromas with Kristin Hook, MD - NA/did not attend
NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - Yes	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - No	NF1 Research Corner: NF-SWN VCEP rules for FN1 and SPREDI with Alicia Gomes, MS CGC - NA/did not attend
NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - Yes	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - No	NF1 Research Corner: Building cellular immunotherapies for MPNST treatment with Kyle Williams, PhD - NA/did not attend
NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - Yes	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - No	NF1 Research Corner: Updates on clinical trial for MPNST with Robert Galvin, MD - NA/did not attend
Patient Resources with Erica Berg & Dale Berg	Patient Resources with Erica Berg & Dale Berg - Yes	Patient Resources with Erica Berg & Dale Berg - No	Patient Resources with Erica Berg & Dale Berg - NA/did not attend
Schwannomatosis (SWN) Research with Kim Ostrow, PhD	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - Yes	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - No	Schwannomatosis (SWN) Research with Kim Ostrow, PhD - NA/did not attend
Genetics: NF2 and genetic testing with Lisa Schimmenti, MD	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - Yes	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - No	Genetics: NF2 and genetic testing with Lisa Schimmenti, MD - NA/did not attend
Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - Yes	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - No	Patient Experience Forum with Danette Fettig-Halloran, Elizabeth & Allan Halloran and Rissa Hall MS, CGC - NA/did not attend
Working with Legislature: Rare diseases	Working with Legislature: Rare diseases - Yes	Working with Legislature: Rare diseases - No	Working with Legislature: Rare diseases - NA/did not attend

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