Scientific Publications

Psychometric performance of a new condition-specific preference-weighted measure, VILL-UI, and EQ-5D-5L in patients with age-related macular degeneration: A MACUSTAR Study Report

Donna Rowen, Jill Carlton, Emily McDool, Frank G Holz, Nadia Zakaria, Jan H Terheyden, Robert P Finger; MACUSTAR Consortium

26.4.2025, Value in Health, https://doi.org/10.1016/j.jval.2025.04.2155

Read the full article here

Heterogeneous Visual Function Deficits in Intermediate Age-Related Macular Degeneration: A MACUSTAR Report

Hannah Dunbar, David Crabb, Charlotte Behning, Alison M Binns, Amina Abdirahman, Jan H Terheyden, Stephen Poor, Robert P Finger, Sergio Leal, Adnan Tufail, Frank G Holz, Matthias Schmid, Ulrich F O Luhmann; MACUSTAR Consortium

Ophthalmology Science, Volume 5, Issue 4, July–August 2025, doi: 10.1016/j.xops.2025.100708.

The Spectrum of Functional, Structural, and Patient-Reported Outcomes in Intermediate Age-Related Macular Degeneration: A MACUSTAR Study Report

Jan Terheyden, Frank Holz, Charlotte Behning, Hannah Dunbar, Steffen Schmitz-Valckenberg, Adnan Tufail, Matthias Schmid, David P Crabb, Marlene Saßmannshausen, Alison Binns, Carel B Hoyng, Nadia Zakaria, Stephen Poor, Klaus-Peter Moll, Deborah Cosette, Cecília Martinho, Joana Batuca, José Cunha-Vaz, Ulrich F O Luhmann, Sergio Leal, Robert P Finger; MACUSTAR consortium

Genetic Risk of Reticular Pseudodrusen in Age-Related Macular Degeneration: HTRA1 /lncRNA BX842242.1 dominates, with no evidence for Complement Cascade involvement

Samaneh Farashi, Carla J Abbott, Brendan Re Ansell, Zhichao Wu, Lebriz Altay, Ella Arnon, Louis Arnould, Yelena Bagdasarova, Konstantinos Balaskas, Fred K Chen, Emily Chew, Itay Chowers, Steven Clarke, Catherine Cukras, Cécile Delcourt, Marie-Noëlle Delyfer, Anneke I den Hollander, Sascha Fauser, Robert P Finger, Pierre-Henry Gabrielle, Jiru Han, Lauren Ab Hodgson, Ruth Hogg, Frank G Holz, Carel Hoyng, Himeesh Kumar, Eleonora M Lad, Aaron Lee, Ulrich Fo Luhmann, Matthias M Mauschitz, Amy J McKnight, Samuel McLenachan, Aniket Mishra, Ismail Moghul, Luz D Orozco, Danuta M Sampson, Liam W Scott, Vasilena Sitnilska, Scott Song, Amy Stockwell, Anand Swaroop, Jan H Terheyden, Liran Tiosano, Adnan Tufail, Brian L Yaspan; MACUSTAR consortium; NICOLA consortium; Alice Pébay, Erica L Fletcher, Robyn H Guymer, Melanie Bahlo

medRxiv preprint. 2024 Sep 28:2024.09.26.24314339. doi: 10.1101/2024.09.26.24314339.

Generalizable Deep Learning for the Detection of Incomplete and Complete Retinal Pigment Epithelium and Outer Retinal Atrophy: A MACUSTAR Report

Coen de Vente, Philippe Valmaggia, Carel Hoyng, Frank G Holz, Mohammad Islam, Caroline Klaver, Camiel Boon, Steffen Schmitz-Valckenberg, Adnan Tufail, Marlene Saßmannshausen, Clara I Sánchez; MACUSTAR Consortium

Translational Vision Science and Technology. 2024 Sep 5;13(9):11. doi: 10.1167/tvst.13.9.11

Development and valuation of a preference-weighted measure in Age-Related Macular Degeneration from the Vision Impairment in Low Luminance (VILL) questionnaire – A MACUSTAR report

Donna Rowen, Jill Carlton, Jan H Terheyden, Robert P Finger, Nyantara Wickramasekera, John Brazier; MACUSTAR Consortium

Retest variability and patient reliability indices of quantitative fundus autofluorescence in age-related macular degeneration: a MACUSTAR study report

Leon von der Emde, Merten Mallwitz, Marc Vaisband, Jan Hasenauer, Marlene Saßmannshausen, Jan Henrik Terheyden; MACUSTAR Consortium; Kenneth R Sloan, Steffen Schmitz-Valckenberg, Robert P Finger, Frank G Holz & Thomas Ach

Sci Rep. 2023 Oct. doi: 10.1038/s41598-023-43417-y.

https://www.nature.com/articles/s41598-023-43417-y

 

Disease-specific assessment of Vision Impairment in Low Luminance in age-related macular degeneration – a MACUSTAR study report

Jan Henrik Terheyden, Susanne G Pondorfer, Charlotte Behning, Moritz Berger, Jill Carlton, Donna Rowen, Christine Bouchet, Stephen Poor, Ulrich F O Luhmann, Sergio Leal, Frank G Holz, Thomas Butt, John E Brazier, Robert P Finger; MACUSTAR consortium

Br J Ophthalmology. 2023 Aug. doi: 10.1136/bjophthalmol-2021-320848. Epub 2022 Mar 30.

https://bjo.bmj.com/content/107/8/1144.long 

 

Test-Retest Variability and Discriminatory Power of Measurements From Microperimetry and Dark Adaptation Assessment in People With Intermediate Age-Related Macular Degeneration – A MACUSTAR Study Report

Bethany E Higgins, Giovanni Montesano, Hannah M P Dunbar, Alison M Binns, Deanna J Taylor, Charlotte Behning, Amina Abdirahman, Matthias C Schmid, Jan H Terheyden, Nadia Zakaria, Stephen Poor, Robert P Finger, Sergio Leal, Frank G Holz, Gary S Rubin, Ulrich F O Luhmann, David P Crabb; MACUSTAR Consortium

 

Transl Vis Sci Technol. 2023 Jul. doi: 10.1167/tvst.12.7.19.

https://tvst.arvojournals.org/article.aspx?articleid=2791336

Characteristics and Spatial Distribution of Structural Features in Age-Related Macular Degeneration: A MACUSTAR Study Report

Marlene Saßmannshausen, Charlotte Behning, Jonas Weinz, Lukas Goerdt, Jan H Terheyden , Petrus Chang, Matthias Schmid, Stephen H Poor, Nadia Zakaria, Robert P Finger, Frank G Holz , Maximilian Pfau, Steffen Schmitz-Valckenberg, Sarah Thiele; MACUSTAR Consortium Members

Ophthalmol Retina. 2023 May. doi: 10.1016/j.oret.2022.12.007. Epub 2022 Dec 20.

https://www.sciencedirect.com/science/article/pii/S2468653022006091?via%3Dihub 

 

Comparability of automated drusen volume measurements in age-related macular degeneration: a MACUSTAR study report

Davide Garzone, Jan Henrik Terheyden, Olivier Morelle, Maximilian W M Wintergerst, Marlene Saßmannshausen, Steffen Schmitz-Valckenberg, Maximilian Pfau, Sarah Thiele, Stephen Poor, Sergio Leal, Frank G Holz, Robert P Finger; MACUSTAR Consortium 
Sci Rep. 2022 Dec. doi: 10.1038/s41598-022-26223-w.

Repeatability and Discriminatory Power of Chart-Based Visual Function Tests in Individuals With Age-Related Macular Degeneration
A MACUSTAR Study Report

 

Dunbar H, Behning C, Abdirahman A, Higgins BE, Binns AM, Terheyden JH, Zakaria N, Poor S, Finger RP, Leal S, Holz FG, Schmid M, Crabb DP,Scientific Publication Rubin GS, Luhmann UFO; for the MACUSTAR Consortium

 

Disease-specific assessment of Vision Impairment in Low Luminance in age- related macular degeneration – a MACUSTAR study report

Scientific Publication

Terheyden JH, Pondorfer SG, Behning C, Berger M, Carlton J, Rowen D, Bouchet C, Poor S, Luhmann UFO, Leal S, Holz FG, Butt T, Brazier JE, Finger RP, the MACUSTAR Consortium

 

Intersession Repeatability of Structural Biomarkers in Early and Intermediate Age-Related Macular Degeneration: A MACUSTAR Study Report

Scientific Publication

Saßmannshausen M, Thiele S, Behning C, Pfau M, Schmid M, Leal S, Luhmann UFO, Finger RP, Holz FG, Schmitz-Valckenberg S, on behalf of the MACUSTAR Consortium

Optimising assessment of dark adaptation data using time to event analysis

Scientific Publication

Higgins BE, Montesano G, Binns AM, Crabb DP

Scientific Reports 2021 April 15: 11. DOI: 10.1038/s41598-021-86193-3

A New Method for Visualizing Drusen and Their Progression in Flood-Illumination Adaptive Optics Ophthalmoscopy

Scientific Publication

Rossi EA, Norberg N, Eandi C, Chaumette C, Kapoor S, Le L, Snyder VC, Martel JN, Gautier J, Gocho K, Dansingani KK, Chhablani J, Arleo A, Mrejen S, Sahel J, Grieve K, Paques M

Translational Vision Science & Technology December 2021, Vol.10, 14. doi:https://doi.org/10.1167/tvst.10.14.19

Challenges, facilitators and barriers to screening study participants in early disease stages-experience from the MACUSTAR study

Scientific Publication

Terheyden JH, Behning C, Lüning A, Wintergerst L,  Basile PG, Tavares D, Melício BA, Leal S, Weissgerber G,Luhmann U, Crabb DP, Tufail A, Hoyng C, Berger M, Schmid M, Silva R, Martinho CV, Cunha-Vaz J, Holz FG and Finger RP, on behalf of the MACUSTAR consortium

BMC Medical Research Methodology 2021 March 17: 54. DOI: 10.1186/s12874-021-01243-8

Clinical Perspectives and Trends: Microperimetry as a Trial Endpoint in Retinal Disease

Scientific Publication

Yang Y, Dunbar H

Ophthalmologica 2021 February: 244. DOI: 10.1159/000515148

Structure–Function Analysis in Macular Drusen With Mesopic and Scotopic Microperimetry

Scientific Publication

Montesano G, Ometto G, Higgins BE, Iester C, Balaskas K, Tufail A, Chakravarthy U, Hogg RE, Crabb DP

TVST 2020 December: 9;13. DOI: 10.1167/tvst.9.13.43

Use of Composite End Points in Early and Intermediate Age-Related Macular Degeneration Clinical Trials: State-of-the-Art and Future Directions

Scientific Publication

Terheyden JH,  Schmitz-Valckenberg S, Crabb DP, Dunbar H, Luhmann UFO, Behning C, Schmid M, Rubin GS, Silva R, Cunha-Vaz J, Tufail A, Weissgerber G, Leal S, Holz FG, Finger RP, on behalf of the MACUSTAR consortium

Ophthalmologica 2020 December 3: 11. DOI: 10.1159/000513591

Clinical study protocol for a low-interventional study in intermediate age-related macular degeneration developing novel clinical endpoints for interventional clinical trials with a regulatory and patient access intention—MACUSTAR.

Scientific Publication

Terheyden JH, Holz FG, Schmitz-Valckenberg S, Lüning A, Schmid M, Rubin GS, Dunbar H, Tufail A, Crabb DP, Binns A, Sánchez CI, Hoyng C, Margaron P, Zakaria N, Durbin M, Luhmann U, Zamiri P, Cunha-Vaz J, Martinho C, Leal S, Finger RP, MACUSTAR consortium

Trials 2020 July 18:p. 659. DOI: 10.1186/s13063-020-04595-6.

MACUSTAR: Entwicklung und klinische Validierung von funktionellen, strukturellen und patientenberichteten Endpunkten bei intermediärer altersabhängiger Makuladegeneration.

Scientific Publication

Terheyden JH, Finger RP, Schmitz-Valckenberg S, Agostini H, Dahlke C, Kuehlewein L, Lang GE, Pauleikhoff D, Wolf A, Boettger MK, Luhmann UFO, Asmus F, Holz FG, MACUSTAR consortium

Ophthalmologe 2019 May 13:1-8 DOI: 10.1007/s00347-019-0907-1

European Network of Clinical Research in Ophthalmology Information Update – December 2018.

Scientific Publication: Martinho C, Sanches D

Ophthalmic Res 2019;28:1-5. DOI: 10.1159/000496497.

MACUSTAR: Development and Clinical Validation of Functional, Structural, and Patient-Reported Endpoints in Intermediate Age-Related Macular Degeneration.

Scientific Publication: MACUSTAR: Development and Clinical Validation of Functional, Structural, and Patient-Reported Endpoints in Intermediate Age-Related Macular DegenerationFinger RP, Schmitz-Valckenberg S, Schmid M, Rubin GS, Dunbar H, Tufail A, Crabb DP, Binns A, Sánchez CI, Margaron P, Normand G, Durbin MK, Luhmann UFO, Zamiri P, Cunha-Vaz J, Asmus F, Holz FG; on behalf of the MACUSTAR consortium

Ophthalmologica. 2018 Aug 28:1-12. doi: 10.1159/000491402.

European Network of Clinical Research in Ophthalmology.
Information Update – June 2017

Scientific Publication: European Network of Clinical Research in Ophthalmology. Information Update – June 2017Martinho C, Sanches D

Ophthalmic Res 2017;58:107–113. DOI: 10.1159/000478073.