Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative

Maggie McGuire Kuhl; Christina Destro; Roseanne D. Dobkin; Thomas F. Tropea; Kathryn Brodkin; Emily Flagg; Lynell P. Lemon; Brittney Henry; Bridget A. McMahon; Craig E. Stanley; Auldyn Matthews-McGee; Laura E.A. Heathers; Mandy Miller; Haley Myers; Tatiana Foroud; Courtney Pico; Caitlin Kelliher; Catherine M. Kopil; Allen Dance; Brian Duggan; Frederic S. Goldstein; Barbara S. Robinson; Jay Robinson; Marty Acevedo; Martha Clark; Carey Hidaka; John Moran; Paul Lugo; Sara Sugihara; Robert D. Paulson; Philip T. Alongi; Linda Comerci; Kevin Kwok; Hyam Kramer; Kenneth Marek; Kenneth Marek; Tanya Simuni; Andrew Siderowf; Caroline Tanner; Thomas F. Tropea; Tatiana Foroud; Lana Chahine; Brit Mollenhauer; Kalpana Merchant; Douglas Galasko; Christopher Coffey; Kathleen Poston; Roseanne Dobkin; Sonja Jonsdottir; Claire Pauly; the Parkinson’s Progression Markers Initiative

doi:10.1002/ana.78220

Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative

Maggie McGuire Kuhl^*
, Christina Destro
, Roseanne D. Dobkin
, Thomas F. Tropea
, Kathryn Brodkin
, Emily Flagg
, Lynell P. Lemon
, Brittney Henry
, Bridget A. McMahon
, Craig E. Stanley
, Auldyn Matthews-McGee
, Laura E.A. Heathers
, Mandy Miller
, Haley Myers
, Tatiana Foroud
, Courtney Pico
, Caitlin Kelliher
, Catherine M. Kopil
, Allen Dance
, Brian Duggan

Frederic S. Goldstein, Barbara S. Robinson, Jay Robinson, Marty Acevedo, Martha Clark, Carey Hidaka, John Moran, Paul Lugo, Sara Sugihara, Robert D. Paulson, Philip T. Alongi, Linda Comerci, Kevin Kwok, Hyam Kramer, Kenneth Marek, Kenneth Marek, Tanya Simuni, Andrew Siderowf, Caroline Tanner, Thomas F. Tropea, Tatiana Foroud, Lana Chahine, Brit Mollenhauer, Kalpana Merchant, Douglas Galasko, Christopher Coffey, Kathleen Poston, Roseanne Dobkin, Sonja Jonsdottir, Claire Pauly, the Parkinson’s Progression Markers Initiative

^*Corresponding author for this work

Transversal Translational Medicine

Research output: Contribution to journal › Editorial

Abstract

Partnership with participants on study protocols and conduct informs study design, provides novel insights, and speeds enrollment and outcomes. The Parkinson's Progression Markers Initiative (PPMI) solicits volunteer inputs through a Community Advisory Board, in-person events, and communication with site teams and centralized study services. Participant inputs have shaped PPMI procedures and protocols including (i) the myPPMI online platform, (ii) return of research information, (iii) lumbar puncture education, (iv) engaging representative populations, and (v) travel procedures. The study's methods for engaging participants and its modifications arising from those conversations provide a model for those seeking to design accessible and impactful studies. ANN NEUROL 2026.

Original language	English
Number of pages	12
Journal	Annals of Neurology
Early online date	21 Apr 2026
DOIs	https://doi.org/10.1002/ana.78220
Publication status	Published - 21 Apr 2026

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McGuire Kuhl, M., Destro, C., Dobkin, R. D., Tropea, T. F., Brodkin, K., Flagg, E., Lemon, L. P., Henry, B., McMahon, B. A., Stanley, C. E., Matthews-McGee, A., Heathers, L. E. A., Miller, M., Myers, H., Foroud, T., Pico, C., Kelliher, C., Kopil, C. M., Dance, A., ... the Parkinson’s Progression Markers Initiative (2026). Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative. Annals of Neurology. https://doi.org/10.1002/ana.78220

@article{be1fb24e008e4261978c08406671dcf2,

title = "Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative",

abstract = "Partnership with participants on study protocols and conduct informs study design, provides novel insights, and speeds enrollment and outcomes. The Parkinson's Progression Markers Initiative (PPMI) solicits volunteer inputs through a Community Advisory Board, in-person events, and communication with site teams and centralized study services. Participant inputs have shaped PPMI procedures and protocols including (i) the myPPMI online platform, (ii) return of research information, (iii) lumbar puncture education, (iv) engaging representative populations, and (v) travel procedures. The study's methods for engaging participants and its modifications arising from those conversations provide a model for those seeking to design accessible and impactful studies. ANN NEUROL 2026.",

author = "\{McGuire Kuhl\}, Maggie and Christina Destro and Dobkin, \{Roseanne D.\} and Tropea, \{Thomas F.\} and Kathryn Brodkin and Emily Flagg and Lemon, \{Lynell P.\} and Brittney Henry and McMahon, \{Bridget A.\} and Stanley, \{Craig E.\} and Auldyn Matthews-McGee and Heathers, \{Laura E.A.\} and Mandy Miller and Haley Myers and Tatiana Foroud and Courtney Pico and Caitlin Kelliher and Kopil, \{Catherine M.\} and Allen Dance and Brian Duggan and Goldstein, \{Frederic S.\} and Robinson, \{Barbara S.\} and Jay Robinson and Marty Acevedo and Martha Clark and Carey Hidaka and John Moran and Paul Lugo and Sara Sugihara and Paulson, \{Robert D.\} and Alongi, \{Philip T.\} and Linda Comerci and Kevin Kwok and Hyam Kramer and Kenneth Marek and Kenneth Marek and Tanya Simuni and Andrew Siderowf and Caroline Tanner and Tropea, \{Thomas F.\} and Tatiana Foroud and Lana Chahine and Brit Mollenhauer and Kalpana Merchant and Douglas Galasko and Christopher Coffey and Kathleen Poston and Roseanne Dobkin and Sonja Jonsdottir and Claire Pauly and \{the Parkinson{\textquoteright}s Progression Markers Initiative\}",

note = "Invited Editorial Publisher Copyright: {\textcopyright} 2026 American Neurological Association.",

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month = apr,

day = "21",

doi = "10.1002/ana.78220",

language = "English",

journal = "Annals of Neurology",

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McGuire Kuhl, M, Destro, C, Dobkin, RD, Tropea, TF, Brodkin, K, Flagg, E, Lemon, LP, Henry, B, McMahon, BA, Stanley, CE, Matthews-McGee, A, Heathers, LEA, Miller, M, Myers, H, Foroud, T, Pico, C, Kelliher, C, Kopil, CM, Dance, A, Duggan, B, Goldstein, FS, Robinson, BS, Robinson, J, Acevedo, M, Clark, M, Hidaka, C, Moran, J, Lugo, P, Sugihara, S, Paulson, RD, Alongi, PT, Comerci, L, Kwok, K, Kramer, H, Marek, K, Marek, K, Simuni, T, Siderowf, A, Tanner, C, Tropea, TF, Foroud, T, Chahine, L, Mollenhauer, B, Merchant, K, Galasko, D, Coffey, C, Poston, K, Dobkin, R, Jonsdottir, S , Pauly, C & the Parkinson’s Progression Markers Initiative 2026, 'Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative', Annals of Neurology. https://doi.org/10.1002/ana.78220

TY - JOUR

T1 - Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative

AU - McGuire Kuhl, Maggie

AU - Destro, Christina

AU - Dobkin, Roseanne D.

AU - Tropea, Thomas F.

AU - Brodkin, Kathryn

AU - Flagg, Emily

AU - Lemon, Lynell P.

AU - Henry, Brittney

AU - McMahon, Bridget A.

AU - Stanley, Craig E.

AU - Matthews-McGee, Auldyn

AU - Heathers, Laura E.A.

AU - Miller, Mandy

AU - Myers, Haley

AU - Foroud, Tatiana

AU - Pico, Courtney

AU - Kelliher, Caitlin

AU - Kopil, Catherine M.

AU - Dance, Allen

AU - Duggan, Brian

AU - Goldstein, Frederic S.

AU - Robinson, Barbara S.

AU - Robinson, Jay

AU - Acevedo, Marty

AU - Clark, Martha

AU - Hidaka, Carey

AU - Moran, John

AU - Lugo, Paul

AU - Sugihara, Sara

AU - Paulson, Robert D.

AU - Alongi, Philip T.

AU - Comerci, Linda

AU - Kwok, Kevin

AU - Kramer, Hyam

AU - Marek, Kenneth

AU - Simuni, Tanya

AU - Siderowf, Andrew

AU - Tanner, Caroline

AU - Tropea, Thomas F.

AU - Foroud, Tatiana

AU - Chahine, Lana

AU - Mollenhauer, Brit

AU - Merchant, Kalpana

AU - Galasko, Douglas

AU - Coffey, Christopher

AU - Poston, Kathleen

AU - Dobkin, Roseanne

AU - Jonsdottir, Sonja

AU - Pauly, Claire

AU - the Parkinson’s Progression Markers Initiative

PY - 2026/4/21

Y1 - 2026/4/21

N2 - Partnership with participants on study protocols and conduct informs study design, provides novel insights, and speeds enrollment and outcomes. The Parkinson's Progression Markers Initiative (PPMI) solicits volunteer inputs through a Community Advisory Board, in-person events, and communication with site teams and centralized study services. Participant inputs have shaped PPMI procedures and protocols including (i) the myPPMI online platform, (ii) return of research information, (iii) lumbar puncture education, (iv) engaging representative populations, and (v) travel procedures. The study's methods for engaging participants and its modifications arising from those conversations provide a model for those seeking to design accessible and impactful studies. ANN NEUROL 2026.

AB - Partnership with participants on study protocols and conduct informs study design, provides novel insights, and speeds enrollment and outcomes. The Parkinson's Progression Markers Initiative (PPMI) solicits volunteer inputs through a Community Advisory Board, in-person events, and communication with site teams and centralized study services. Participant inputs have shaped PPMI procedures and protocols including (i) the myPPMI online platform, (ii) return of research information, (iii) lumbar puncture education, (iv) engaging representative populations, and (v) travel procedures. The study's methods for engaging participants and its modifications arising from those conversations provide a model for those seeking to design accessible and impactful studies. ANN NEUROL 2026.

UR - https://www.scopus.com/pages/publications/105036643225

UR - https://pubmed.ncbi.nlm.nih.gov/42012017/

U2 - 10.1002/ana.78220

DO - 10.1002/ana.78220

M3 - Editorial

C2 - 42012017

AN - SCOPUS:105036643225

SN - 0364-5134

JO - Annals of Neurology

JF - Annals of Neurology

ER -

Partnering With Participant Advisors on the Parkinson's Progression Markers Initiative

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