Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases

Jennifer L. Purks; Erin E. Wilhelm; Ira Shoulson; John Creveling; E. Ray Dorsey; Telba Irony; Tara M. LoCastro; Fernando Pagan; Bernard Ravina; Tanya Simuni; Mary Anne Sterling; Pierre Tariot; Karen E. Anderson

doi:10.1007/s40271-017-0257-5

Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases

Jennifer L. Purks^*, Erin E. Wilhelm, Ira Shoulson, John Creveling, E. Ray Dorsey, Telba Irony, Tara M. LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, Mary Anne Sterling, Pierre Tariot, Karen E. Anderson

^*Corresponding author for this work

Neurology

Research output: Contribution to journal › Letter › peer-review

10 Scopus citations

Original language	English (US)
Pages (from-to)	541-544
Number of pages	4
Journal	Patient
Volume	10
Issue number	5
DOIs	https://doi.org/10.1007/s40271-017-0257-5
State	Published - Oct 1 2017

Funding

Conflicts of interest Karen E. Anderson, MD, is a consultant for Teva Pharmaceutical Industries and previously a consultant for Auspex Pharmaceuticals. She received payments for clinical trials as a site investigator and as overall study principal investigator (PI) and co-PI from Teva and from Auspex. She receives salary support from the Griffin Foundation. She received travel support to attend the symposium. E. Ray Dorsey, MD, has received compensation for consulting activities from Teva. He accepted travel support for the symposium and an honorarium as a working group co-chair. Telba Irony, PhD, has no conflicts or financial disclosures to report. Fer-nando Pagan, MD, is employed by Medstar Georgetown University Hospital and has received consulting support from Teva Pharmaceuticals and accepted travel support for the symposium and an honorarium as working group co-chair. He has received research grants from Teva Neuroscience, US WorldMeds, and Medtronic Education Grant; and received payment for lectures from Teva, Impax, Acadia, US WorldMeds, Lundbeck, and Medtronic. Jennifer L. Purks, BS, is employed by Georgetown University and has received salary support from Auspex Pharmaceuticals and Teva Pharmaceutical Industries as a site clinical trial coordinator. She was given travel support and an honorarium to attend and present two research posters at the symposium. Bernard Ravina, MD, accepted travel support for the symposium and an honorarium as a working group co-chair. He is an employee and equity holder in Voyager Therapeutics. Tanya Simuni, MD, has received consulting support and served as a speaker and accepted an honorarium from Teva Pharmaceuticals. Dr. Simuni accepted travel support for the symposium and an honorarium as a working group co-chair. Ira Shoulson, MD, was a paid consultant (2014–2015) to Auspex Pharmaceuticals, one of the sponsors of the symposium. He was not paid an honorarium or any fees for his participation in the symposium. He receives salary support from Georgetown University via the US Food and Drug Administration–Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319). Pierre Tariot, MD, has received consulting fees from Auspex Pharmaceuticals and accepted travel support for the symposium and an honorarium as a working group co-chair. Erin E. Wilhelm, MPH, receives salary support from Georgetown University and the US Food and Drug Administration-Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319); she was given travel support to attend the symposium. John Creveling, Tara M. LoCastro, and MaryAnne Sterling accepted travel support for the symposium and honoraria as working group co-chairs. Funding The symposium was supported by contributions from Auspex Pharmaceuticals and Teva Pharmaceutical Industries, and in-kind contributions from Georgetown University, Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319), and the Griffin Foundation.

ASJC Scopus subject areas

Nursing (miscellaneous)

Access to Document

10.1007/s40271-017-0257-5

Cite this

Purks, J. L., Wilhelm, E. E., Shoulson, I., Creveling, J., Dorsey, E. R., Irony, T., LoCastro, T. M., Pagan, F., Ravina, B., Simuni, T., Sterling, M. A., Tariot, P., & Anderson, K. E. (2017). Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases. Patient, 10(5), 541-544. https://doi.org/10.1007/s40271-017-0257-5

@article{f16d6301fbb04d5d8a6f8e70c66c92e2,

title = "Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases",

author = "Purks, {Jennifer L.} and Wilhelm, {Erin E.} and Ira Shoulson and John Creveling and Dorsey, {E. Ray} and Telba Irony and LoCastro, {Tara M.} and Fernando Pagan and Bernard Ravina and Tanya Simuni and Sterling, {Mary Anne} and Pierre Tariot and Anderson, {Karen E.}",

note = "Funding Information: Conflicts of interest Karen E. Anderson, MD, is a consultant for Teva Pharmaceutical Industries and previously a consultant for Auspex Pharmaceuticals. She received payments for clinical trials as a site investigator and as overall study principal investigator (PI) and co-PI from Teva and from Auspex. She receives salary support from the Griffin Foundation. She received travel support to attend the symposium. E. Ray Dorsey, MD, has received compensation for consulting activities from Teva. He accepted travel support for the symposium and an honorarium as a working group co-chair. Telba Irony, PhD, has no conflicts or financial disclosures to report. Fer-nando Pagan, MD, is employed by Medstar Georgetown University Hospital and has received consulting support from Teva Pharmaceuticals and accepted travel support for the symposium and an honorarium as working group co-chair. He has received research grants from Teva Neuroscience, US WorldMeds, and Medtronic Education Grant; and received payment for lectures from Teva, Impax, Acadia, US WorldMeds, Lundbeck, and Medtronic. Jennifer L. Purks, BS, is employed by Georgetown University and has received salary support from Auspex Pharmaceuticals and Teva Pharmaceutical Industries as a site clinical trial coordinator. She was given travel support and an honorarium to attend and present two research posters at the symposium. Bernard Ravina, MD, accepted travel support for the symposium and an honorarium as a working group co-chair. He is an employee and equity holder in Voyager Therapeutics. Tanya Simuni, MD, has received consulting support and served as a speaker and accepted an honorarium from Teva Pharmaceuticals. Dr. Simuni accepted travel support for the symposium and an honorarium as a working group co-chair. Ira Shoulson, MD, was a paid consultant (2014–2015) to Auspex Pharmaceuticals, one of the sponsors of the symposium. He was not paid an honorarium or any fees for his participation in the symposium. He receives salary support from Georgetown University via the US Food and Drug Administration–Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319). Pierre Tariot, MD, has received consulting fees from Auspex Pharmaceuticals and accepted travel support for the symposium and an honorarium as a working group co-chair. Erin E. Wilhelm, MPH, receives salary support from Georgetown University and the US Food and Drug Administration-Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319); she was given travel support to attend the symposium. John Creveling, Tara M. LoCastro, and MaryAnne Sterling accepted travel support for the symposium and honoraria as working group co-chairs. Funding Information: Funding The symposium was supported by contributions from Auspex Pharmaceuticals and Teva Pharmaceutical Industries, and in-kind contributions from Georgetown University, Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319), and the Griffin Foundation.",

year = "2017",

month = oct,

day = "1",

doi = "10.1007/s40271-017-0257-5",

language = "English (US)",

volume = "10",

pages = "541--544",

journal = "Patient",

issn = "1178-1653",

publisher = "Springer Science + Business Media",

number = "5",

}

Purks, JL, Wilhelm, EE, Shoulson, I, Creveling, J, Dorsey, ER, Irony, T, LoCastro, TM, Pagan, F, Ravina, B, Simuni, T, Sterling, MA, Tariot, P & Anderson, KE 2017, 'Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases', Patient, vol. 10, no. 5, pp. 541-544. https://doi.org/10.1007/s40271-017-0257-5

Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases. / Purks, Jennifer L.; Wilhelm, Erin E.; Shoulson, Ira et al.
In: Patient, Vol. 10, No. 5, 01.10.2017, p. 541-544.

Research output: Contribution to journal › Letter › peer-review

TY - JOUR

T1 - Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases

AU - Purks, Jennifer L.

AU - Wilhelm, Erin E.

AU - Shoulson, Ira

AU - Creveling, John

AU - Dorsey, E. Ray

AU - Irony, Telba

AU - LoCastro, Tara M.

AU - Pagan, Fernando

AU - Ravina, Bernard

AU - Simuni, Tanya

AU - Sterling, Mary Anne

AU - Tariot, Pierre

AU - Anderson, Karen E.

N1 - Funding Information: Conflicts of interest Karen E. Anderson, MD, is a consultant for Teva Pharmaceutical Industries and previously a consultant for Auspex Pharmaceuticals. She received payments for clinical trials as a site investigator and as overall study principal investigator (PI) and co-PI from Teva and from Auspex. She receives salary support from the Griffin Foundation. She received travel support to attend the symposium. E. Ray Dorsey, MD, has received compensation for consulting activities from Teva. He accepted travel support for the symposium and an honorarium as a working group co-chair. Telba Irony, PhD, has no conflicts or financial disclosures to report. Fer-nando Pagan, MD, is employed by Medstar Georgetown University Hospital and has received consulting support from Teva Pharmaceuticals and accepted travel support for the symposium and an honorarium as working group co-chair. He has received research grants from Teva Neuroscience, US WorldMeds, and Medtronic Education Grant; and received payment for lectures from Teva, Impax, Acadia, US WorldMeds, Lundbeck, and Medtronic. Jennifer L. Purks, BS, is employed by Georgetown University and has received salary support from Auspex Pharmaceuticals and Teva Pharmaceutical Industries as a site clinical trial coordinator. She was given travel support and an honorarium to attend and present two research posters at the symposium. Bernard Ravina, MD, accepted travel support for the symposium and an honorarium as a working group co-chair. He is an employee and equity holder in Voyager Therapeutics. Tanya Simuni, MD, has received consulting support and served as a speaker and accepted an honorarium from Teva Pharmaceuticals. Dr. Simuni accepted travel support for the symposium and an honorarium as a working group co-chair. Ira Shoulson, MD, was a paid consultant (2014–2015) to Auspex Pharmaceuticals, one of the sponsors of the symposium. He was not paid an honorarium or any fees for his participation in the symposium. He receives salary support from Georgetown University via the US Food and Drug Administration–Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319). Pierre Tariot, MD, has received consulting fees from Auspex Pharmaceuticals and accepted travel support for the symposium and an honorarium as a working group co-chair. Erin E. Wilhelm, MPH, receives salary support from Georgetown University and the US Food and Drug Administration-Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319); she was given travel support to attend the symposium. John Creveling, Tara M. LoCastro, and MaryAnne Sterling accepted travel support for the symposium and honoraria as working group co-chairs. Funding Information: Funding The symposium was supported by contributions from Auspex Pharmaceuticals and Teva Pharmaceutical Industries, and in-kind contributions from Georgetown University, Georgetown University Center of Excellence in Regulatory Science and Innovation (CERSI; FD004319), and the Griffin Foundation.

PY - 2017/10/1

Y1 - 2017/10/1

UR - http://www.scopus.com/inward/record.url?scp=85021976753&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85021976753&partnerID=8YFLogxK

U2 - 10.1007/s40271-017-0257-5

DO - 10.1007/s40271-017-0257-5

M3 - Letter

C2 - 28688021

AN - SCOPUS:85021976753

SN - 1178-1653

VL - 10

SP - 541

EP - 544

JO - Patient

JF - Patient

IS - 5

ER -

Inaugural Conference on Incorporating Patient-Reported Outcomes and Patient Preference Information into Clinical Research, Clinical Care, and Risk-Benefit Assessments for Neurodegenerative Diseases

Funding

ASJC Scopus subject areas

Access to Document

Other files and links

Cite this