Research outputs

@article{Kandel2025,

title = {The impact of dry eye disease on patient-reported quality of life: A Save Sight Dry Eye Registry study},

author = {H Kandel and F Stapleton and LE Downie and NC Chidi-Egboka and D Mingo-Botin and F Arnalich-Montiel and S Rauz and A Recchioni and S Sitaula and M Markoulli and V Daien and F Babeau and G Geerling and JP Craig and SL Watson},

doi = {10.1016/j.jtos.2025.02.005},

issn = {1542-0124},

year  = {2025},

date = {2025-00-00},

urldate = {2025-00-00},

journal = {The Ocular Surface},

volume = {37},

pages = {11–23},

keywords = {Fight Corneal Blindness, The Ocular Surface},

pubstate = {published},

tppubtype = {article}

}

@article{Watson2024,

title = {Efficient capture of dry eye data from the real world: The Save Sight Dry Eye Registry},

author = {Stephanie Louise Watson and Ngozi Charity Chidi-Egboka and Pauline Khoo and Maria Cabrera-Aguas and Fiona Stapleton and Gerd Geerling and David Mingo and Saaeha Rauz and Alberto Recchioni and Francisco Arnalich-Montiel and Laura Elizabeth Downie and Vincent Daien and Fanny Babeau and Jennifer P Craig and Himal Kandel},

doi = {10.1016/j.ajoint.2024.100065},

issn = {2950-2535},

year  = {2024},

date = {2024-10-00},

journal = {AJO International},

volume = {1},

number = {3},

publisher = {Elsevier BV},

keywords = {AJO International, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Borchert2023,

title = {Epithelium-on versus epithelium-off corneal collagen crosslinking for keratoconus: a systematic review and meta-analysis},

author = {Grace A. Borchert and Himal Kandel and Stephanie L. Watson},

doi = {10.1007/s00417-023-06287-8},

issn = {1435-702X},

year  = {2024},

date = {2024-06-00},

journal = {Graefe's Archive for Clinical and Experimental Ophthalmology},

volume = {262},

number = {6},

pages = {1683–1692},

publisher = {Springer Science and Business Media LLC},

abstract = {Purpose Corneal collagen crosslinking (CXL) is the primary treatment for progressive keratoconus which has a significant impact on vision and quality of life. Our study aimed to compare the efficacy and safety of epithelium-on versus epithelium-off CXL to treat keratoconus. Methods We searched PubMed, Medline, Embase, Web of Science, and Scopus databases. We included studies that compared standard epithelium-off with epithelium-on CXL. The primary outcome measures were changes in corrected distance visual acuity (CDVA) and maximum keratometry (Kmax), and the secondary outcomes were uncorrected distance visual acuity (UDVA), central corneal thickness (CCT), and adverse events. A meta-analysis was performed on the primary and secondary outcomes based on the weighted mean differences between baseline to 12-month follow-up. Results The search retrieved 887 publications with 27 included in the systematic review. A total of 1622 eyes (1399 patients; age 25.51 ± 4.02 years) were included in comparisons of epithelium-off to epithelium-on CXL in keratoconus. Epithelium-off CXL treated 800 eyes and epithelium-on CXL for 822 eyes. At 12-month follow-up, CDVA and Kmax showed no significant difference between the epithelium-off and epithelium-on CXL. The secondary outcomes showed that UDVA was better in epithelium-off CXL (− 0.11 D , 95% CI − 0.12, − 0.1; p < 0.001) and there was more thinning in CCT in epithelium-off CXL (− 3.23 μm, 95% CI − 4.64, − 1.81; p <0.001). Conclusion Epithelium-off and epithelium-on CXL were both effective to treat progressive keratoconus. Further research is needed to compare the long-term outcomes and safety of both CXL protocols for adaptation into clinical practice.},

keywords = {Fight Corneal Blindness, Graefe's Archive for Clinical and Experimental Ophthalmology},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2023,

title = {Comparison of standard versus accelerated corneal collagen cross-linking for keratoconus: 5-year outcomes from the Save Sight Keratoconus Registry},

author = {Himal Kandel and Marco Abbondanza and Aanchal Gupta and Richard Mills and Adam S. Watson and Constantinos Petsoglou and Yves Kerdraon and Stephanie L. Watson},

doi = {10.1038/s41433-023-02641-6},

issn = {1476-5454},

year  = {2024},

date = {2024-01-00},

journal = {Eye},

volume = {38},

number = {1},

pages = {95–102},

publisher = {Springer Science and Business Media LLC},

abstract = {Objective To compare long-term effectiveness of Standard (UV intensity: 3 mW/cm 2 , duration: 30 min) vs Accelerated (UV intensity: 9 mW/cm 2 , duration: 10 min) corneal cross-linking (CXL) for stabilising keratoconus. Methods Data for this observational study were captured through a web-based registry system from the routine clinical practice (15 sites across Australia, New Zealand and Italy). The outcomes were compared using mixed-effects regression models. A total of 100 eyes (75 patients) who had standard CXL and 76 eyes (66 patients) who had accelerated CXL, with a follow-up visit at five-year post-CXL were included. Results Both CXL protocols were effective and safe in stabilising keratoconus and improving outcomes. The adjusted mean changes (95% CI) in outcomes were better in standard CXL than in accelerated CXL [visual acuity gain, 10.2 (7.9–12.5) vs 4.9 (1.6–8.2) logMAR letters; pinhole visual acuity 5.7 (3.5–7.8) vs 0.2 (−2.2 to 2.5) logMAR letters; Kmax −1.8 (−4.3 to 0.6) vs 1.2 (−1.5 to 3.9)D; K2 −0.9 (–2.2 to 0.3) vs 0.1 (−1.3 to 1.6)D; MCT –3.0 (−13.7 to 7.7) vs −11.8 (−23.9 to 0.4) µm ( p values for visual acuity, pinhole visual acuity, Kmax: <0.05; for K2 and MCT: >0.05)]. The frequency of adverse events at the 5-year follow-up visit was low in both groups [standard, 5 (5%; haze 3; scarring 1, epithelial defect 1) and accelerated 3 (3.9%; haze 2, scarring 1)]. Conclusions Both standard and accelerated CXL were safe and effective procedures for stabilising keratoconus in the long term. The standard CXL resulted in greater improvements in visual acuity and keratometry.},

keywords = {Eye, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Le2023,

title = {Evaluation of ocular neuropathic pain},

author = {Damien Tuan-Man Le and Himal Kandel and Stephanie L. Watson},

doi = {10.1016/j.jtos.2023.09.009},

issn = {1542-0124},

year  = {2023},

date = {2023-10-00},

journal = {The Ocular Surface},

volume = {30},

pages = {213–235},

publisher = {Elsevier BV},

keywords = {Fight Corneal Blindness, The Ocular Surface},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2023b,

title = {Opportunities and challenges for clinical registries},

author = {Himal Kandel and Mark C. Gillies and Stephanie L. Watson},

doi = {10.1111/ceo.14260},

issn = {1442-9071},

year  = {2023},

date = {2023-08-00},

journal = {Clinical and Experimental Ophthalmology},

volume = {51},

number = {6},

pages = {651–652},

publisher = {Wiley},

keywords = {Clinical and Experimental Ophthalmology, Fight Corneal Blindness, Fight Retinal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Ferdi2022,

title = {Five‐year corneal cross‐linking outcomes: A Save Sight Keratoconus Registry Study},

author = {Alex C. Ferdi and Himal Kandel and Vuong Nguyen and Jeremy Tan and Francisco Arnalich‐Montiel and Marco Abbondanza and Stephanie L. Watson},

doi = {10.1111/ceo.14177},

issn = {1442-9071},

year  = {2023},

date = {2023-01-00},

journal = {Clinical and Experimental Ophthalmology},

volume = {51},

number = {1},

pages = {9–18},

publisher = {Wiley},

abstract = {Background We aimed to determine the long‐term outcomes of epithelium‐off cross‐linking (CXL) in keratoconus patients. Methods An observational registry study from 41 centres across 5 countries was carried out. Primary outcomes included the mean change in visual acuity (VA), Kmax, K2, and thinnest corneal thickness (TCT) at 1–5 years. Secondary outcomes included the percentage of eyes with worsening, stable and improving outcomes. Results There were 976 eyes of 794 patients with 1‐year of complete follow‐up, 501 eyes with 2‐years, 355 with 3‐years, 235 with 4‐years and 162 with 5‐years. There was a significant improvement in mean VA from baseline by 3.7 logMAR letters ( p < 0.001) in year 1, and 6.9 ( p < 0.001) in year 5. Mean Kmax decreased by 1.2 dioptres (D; p < 0.01) in year 1. During subsequent years the Kmax flattening appeared sustained but this was not statistically significant. K2 flattened significantly from baseline in year 1 and then remained stable. At 1 year, 4.1% patients were poor responders to CXL in terms of VA, losing ≥15 letters. The proportion of the poor responders remained unchanged: 4.9% at 5‐years. The proportion of poor responders in terms of Kmax remained similar: 5.9% steepening by ≥2D at 1‐year and 7.5% at 5‐years. The proportion of K2 poor responders remained stable with 4.7% steepening by ≥2D at 1‐year and 5.8% at 5‐years. Conclusions Cross‐linking is effective at stabilising keratoconus up to 5 years in most patients. However, a small proportion of eyes failed to stabilise and had reduced vision.},

keywords = {Clinical and Experimental Ophthalmology, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Durakovic2023,

title = {Mental Health Impact of Keratoconus: A Systematic Review},

author = {Emily Durakovic and Himal Kandel and Stephanie L. Watson},

doi = {10.1097/ico.0000000000003263},

issn = {0277-3740},

year  = {2023},

date = {2023-00-00},

journal = {Cornea},

volume = {42},

number = {9},

pages = {1187–1197},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The aim of this study was to investigate the impact of keratoconus on the mental health and emotional well-being of affected patients. Methods: A literature search was conducted according to the PRISMA guidelines. Databases searched included MEDLINE, PubMed, EMBASE, Scopus, Web of Science, Cochrane, and PsycINFO. Articles were included if they were a primary study that investigated mental health or emotional quality-of-life outcomes in patients with keratoconus. Results: Thirty-one articles met inclusion criteria of a total yield of 444. Most studies reported keratoconus to have a negative effect on mental health or emotional well-being. Worsening mental health scores correlated with lower visual acuity (VA) in the better eye, lower VA in the worse eye, increasing ocular asymmetry, and worsening disease severity. Mental health impacts were often reported to be disproportionate to that of the effects on VA. Over time mental health outcomes improved, suggesting stabilization of disease and patient acceptance. Conclusions: Patients with keratoconus may suffer detriments to mental health despite having relatively good VA. Understanding and acceptance of their disease may assist in assuaging mental health concerns. Further work may be needed to investigate whether benefit exists in routine mental health screening of patients with keratoconus.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2022,

title = {Cross-Linking Improves the Quality of Life of People With Keratoconus: A Cross-Sectional and Longitudinal Study From the Save Sight Keratoconus Registry},

author = {Himal Kandel and Jern Yee Chen and Srujana Sahebjada and Elaine W. Chong and Steven Wiffen and Stephanie L. Watson},

doi = {10.1097/ico.0000000000003185},

issn = {0277-3740},

year  = {2023},

date = {2023-00-00},

journal = {Cornea},

volume = {42},

number = {11},

pages = {1377–1383},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The purpose of this study was to comprehensively evaluate the patient-reported quality-of-life (QoL) outcomes after corneal cross-linking for keratoconus. Methods: This Save Sight Keratoconus Registry study used cross-sectional and longitudinal designs. For the cross-sectional study, 532 patients with keratoconus (mean age 30.9 ± 11.9 years; 31.6% female) completed the Keratoconus Outcomes Research Questionnaire (KORQ) and 343 patients with keratoconus (mean age 28.3 ± 10.7 years; 32.7% female) completed the Impact of Vision Impairment (IVI) questionnaires. Similarly, for the longitudinal study, 39 patients (mean age 24.2 ± 8.4 years; 23.1% female) completed the KORQ and 16 patients (mean age 27.9 ± 17.1 years; 50.0% female) completed the IVI questionnaire before and after 6 months of cross-linking. The QoL data were analyzed using the Andrich Rating Scale Model of Rasch analysis. Results: For both cross-sectional and longitudinal studies, the KORQ and IVI scales demonstrated satisfactory psychometric properties [ordered and well-spaced categories, variance explained by the measure 52%–73%, person separation index 2.4–3.9, and fit statistics <1.3 (most cases)]. The patients who had not undergone corneal cross-linking had worse mean activity limitation than those with cross-linking ( P = 0.008). However, the differences in symptoms and emotional scores between the groups were not statistically significant (both P > 0.05). The longitudinal study showed that cross-linking was associated with improved activity limitation, symptoms, and emotional scores. Conclusions: The KORQ and IVI are psychometrically robust tools to evaluate the QoL outcomes of corneal cross-linking. Cross-linking is associated with improved activity limitation, symptoms, and emotional status.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2022b,

title = {Patient-Reported Outcomes in Keratoconus: A Save Sight Keratoconus Registry Study},

author = {Himal Kandel and Konrad Pesudovs and Vuong Nguyen and Jern Yee Chen and Alexander Poon and Richard Mills and Stephanie L. Watson},

doi = {10.1097/ico.0000000000003119},

issn = {0277-3740},

year  = {2023},

date = {2023-00-00},

journal = {Cornea},

volume = {42},

number = {5},

pages = {590–597},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The aim of this study was to evaluate the quality-of-life (QoL) status in keratoconus severity subgroups using the Keratoconus Outcomes Research Questionnaire (KORQ) and to determine the relationship between the QoL scores and the standard clinical variables. Methods: A cross-sectional study was conducted using prospective, web-based Save Sight Keratoconus Registry data. Rasch analysis was conducted on the KORQ data using the Andrich Rating Scale Model. Comparative analysis included Welch t test and 1-way ANOVA. Associations between visual acuity, corneal curvature, and minimum corneal thickness with KORQ scores were evaluated with Pearson correlation and multiple regression adjusted for age and sex. Results: The KORQ was completed by 542 patients with keratoconus (male, 67.7%; mean age, 31.6 years). Keratoconus severity, based on Kmax, was mild [<48 diopter (D)], moderate (48–55 D), and severe (>55 D) in 26.3%, 45.0%, and 28.7% of patients, respectively. Activity limitation (AL) and symptoms (SY) scales of the KORQ had robust psychometric properties including well-functioning response categories, unidimensionality, excellent measurement precision, and satisfactory fit statistics. In a group-wise analysis, the female patients had significantly lower AL and SY scores. Similarly, the severe keratoconus group had the worst AL and SY scores. Contact lens wearers had worse KORQ scores than the spectacles wearers. Overall, statistically significant but weak correlations between KORQ scores and visual acuity and corneal curvature (Kmax and K2) (Pearson r, 0.11–0.35) were observed. The correlations for SY were weaker than for AL scores. Conclusions: Female sex, contact lens wear, reduced visual acuity, and higher disease severity were associated with worse AL and SY scores in keratoconus. Although the correlations between clinical and QoL scores were statistically significant, the low magnitudes suggested a complex relationship between clinical parameters and patient-reported outcomes.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Benito-Pascual2022,

title = {Efficacy and Safety of Standard Corneal Cross-Linking Procedures Performed With Short Versus Standard Riboflavin Induction: A Save Sight Keratoconus Registry Study},

author = {Blanca Benito-Pascual and Himal Kandel and Marco Abbondanza and Richard Mills and Laurence Sullivan and Stephanie L. Watson},

doi = {10.1097/ico.0000000000003058},

issn = {0277-3740},

year  = {2023},

date = {2023-00-00},

journal = {Cornea},

volume = {42},

number = {3},

pages = {326–331},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The objective of this study was to compare the effectiveness and safety of short versus standard riboflavin induction times in cross-linking (CXL) for keratoconus. Methods: A retrospective comparative study was conducted with data from the Save Sight Keratoconus Registry. Inclusion criteria were epithelium-off technique, standard UVA CXL protocol (3 mW/cm 2 for 30 minutes), riboflavin induction for 15 minutes (short) or 30 minutes (standard), and 1 year of follow-up data after CXL. Outcome measures included changes in best-corrected visual acuity (BCVA), keratometry in the steepest meridian (K2), maximum keratometry (Kmax), thinnest pachymetry (TCT), and adverse events. Analysis was conducted using mixed-effects regression models adjusted for age, sex, visual acuity, keratometry, pachymetry, practice, and eye laterality. Results: Two hundred eighty eyes (237 patients; mean, 27.3 ± 10.5 years old; 30% female) were included. The riboflavin induction time was short in 102 eyes (82 patients) and standard in 178 eyes (155 patients). The baseline characteristics (sex, mean age, BCVA, keratometry, and pachymetry [TCT]) were similar between the groups. At the 1-year follow-up visit, no statistically significant differences were observed in flattening in K2 and improvement in BCVA. Greater Kmax flattening [−1.5 diopters (D) vs. −0.5D},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Borchert2022,

title = {Oxygen in Corneal Collagen Crosslinking to Treat Keratoconus: A Systematic Review and Meta-Analysis},

author = {Grace A. Borchert and Stephanie L. Watson and Himal Kandel},

doi = {10.1097/apo.0000000000000555},

issn = {2162-0989},

year  = {2022},

date = {2022-09-00},

journal = {Asia-Pacific Journal of Ophthalmology},

volume = {11},

number = {5},

pages = {453–459},

publisher = {Elsevier BV},

keywords = {Asia-Pacific Journal of Ophthalmology, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Ferdi2021,

title = {Predictors of progression in untreated keratoconus: a Save Sight Keratoconus Registry study},

author = {Alex Ferdi and Vuong Nguyen and Himal Kandel and Jeremy C K Tan and Francisco Arnalich-Montiel and Marco Abbondanza and Stephanie Watson},

doi = {10.1136/bjophthalmol-2020-317547},

issn = {1468-2079},

year  = {2022},

date = {2022-09-00},

journal = {British Journal of Ophthalmology},

volume = {106},

number = {9},

pages = {1206–1211},

publisher = {BMJ},

abstract = {Aims We set out to identify risk factors for progression in untreated keratoconus patients from 34 centres across Australia, New Zealand, Spain and Italy. Methods Patients were divided into ‘progressors’ and ‘stable’ patients for each clinical parameter: visual acuity (VA), steepest keratometry (maximum keratometry (Max-K)) and thinnest corneal thickness (TCT). Primary outcomes were the proportion of eyes with sustained progression in VA, Max-K or TCT within 3 years. Secondary outcomes included predictors of progression. Results There were 3994 untreated eyes from 2283 patients. The proportion of eyes with VA, Max-K and TCT progression at 1 year were 3.2%, 6.6% and 3.1% respectively. Factors associated with VA loss were higher baseline VA (HR 1.15 per logMAR line increase in VA; p<0.001) and steeper baseline Max-K (HR 1.07 per 1D increase; p<0.001). Younger baseline age was associated with Max-K steepening (HR 0.96 per year older; p=0.001). Thicker baseline TCT, steeper baseline Max-K and younger baseline age were associated with TCT thinning: (HR 1.08 per 10 µm increase in TCT; p<0.001), (HR 1.03 per 1D increase; p=0.02) and (HR 0.98 per year younger; p=0.01), respectively. Conclusions Steeper Max-K and younger age were the most clinically useful baseline predictors of progression as they were associated with worsening of two clinical parameters. Every 1D steeper Max-K was associated with a 7% and 3% greater risk of worsening VA and thinning TCT, respectively. Each 1 year younger was associated with a 4% and 2% greater risk of steepening Max-K and thinning TCT, respectively.},

keywords = {British Journal of Ophthalmology, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2022c,

title = {Quality of life impact of eye diseases: a Save Sight Registries study},

author = {Himal Kandel and Vuong Nguyen and Stefano Piermarocchi and Lala Ceklic and Kelvin Teo and Francisco Arnalich‐Montiel and Stefania Miotto and Vincent Daien and Mark C. Gillies and Stephanie L. Watson},

doi = {10.1111/ceo.14050},

issn = {1442-9071},

year  = {2022},

date = {2022-05-00},

journal = {Clinical and Experimental Ophthalmology},

volume = {50},

number = {4},

pages = {386–397},

publisher = {Wiley},

abstract = {Background The objectives of this study were to evaluate the quality‐of‐life (QoL) impact of eye diseases (keratoconus; neovascular age‐related macular degeneration, AMD; retinal vein occlusion, RVO; and diabetic macular edema, DME) using the Impact of Vision Impairment (IVI) questionnaire, and to determine the relationship between the IVI scores and visual acuity. Methods This cross‐sectional, multicentre, real‐world study utilised the prospective, web‐based Save Sight Registries. The IVI was completed by 1557 patients: 307 with keratoconus, 1049 with AMD, 148 with RVO and 53 with DME. Statistical analysis included Rasch analysis, Welch t ‐test, one‐way ANOVA, Tukey's test, Pearson correlation, and multiple regression. Results The IVI scales (Overall; Visual Function, VF; Emotional, EM) had robust psychometric properties. The keratoconus patients had the worst Overall (adjusted mean: 48.2 vs. DME 58.8, RVO 64.6, AMD 67.6 units), VF (47.7 vs. DME 59.4, RVO 65.9, AMD 68.9 units) and EM (50.8 vs. DME 63.1, RVO 69.2, AMD 71.8 units) scores (all p < 0.05). The IVI scales scores weakly correlated with better and worse eye visual acuity (Pearson's r 0.24–0.39, all p < 0.05). The correlations were similar in the better eye (Overall 0.35, VF 0.39, EM 0.24) and the worse eye (Overall 0.31, VF 0.33, EM 0.25) visual acuity. Correlations with visual acuity were stronger for VF than for the EM scores. Conclusions The IVI was a psychometrically robust QoL questionnaire. Keratoconus patients had worse IVI scores than patients with retinal diseases. The low strength of correlations between visual acuity and QoL scores, although statistically significant, suggested that a complex relationship exists.},

keywords = {Clinical and Experimental Ophthalmology, Fight Corneal Blindness, Fight Retinal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2021,

title = {The Save Sight Keratoconus Registry – Optometry Module: an opportunity to use real-world data to advance eye care},

author = {Himal Kandel and Laura E Downie and Stephanie L Watson},

doi = {10.1080/08164622.2021.1924626},

issn = {1444-0938},

year  = {2022},

date = {2022-01-02},

journal = {Clinical and Experimental Optometry},

volume = {105},

number = {1},

pages = {96–99},

publisher = {Informa UK Limited},

keywords = {Clinical and Experimental Optometry, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Khoo2022,

title = {Clinical Registries in Dry Eye Disease: A Systematic Review},

author = {Pauline Khoo and Laura E. Downie and Fiona Stapleton and Saaeha Rauz and Vincent Daien and Francisco Arnalich and David Mingo and Stephanie L. Watson},

doi = {10.1097/ico.0000000000003139},

issn = {0277-3740},

year  = {2022},

date = {2022-00-00},

journal = {Cornea},

volume = {41},

number = {12},

pages = {1572–1583},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The objective of this study was to undertake a systematic review of the literature reporting on clinical registries in dry eye disease (DED). Methods: Electronic searches were conducted using systematic review methodology to provide an overview of clinical registries in ophthalmology and to identify clinical registries reporting on dry eye parameters. Two reviewers independently assessed titles and abstracts, then full-texts for eligibility. Results: A total of 129 clinical registries in ophthalmology were identified. The most common conditions captured were blindness or low vision, followed by glaucoma and corneal transplantation. Most of the registries originated in Europe (n = 56), followed by North America (n = 28). Of the registries identified, 12 were multinational, 59 were national, and 17 were regional. The second search identified 27 eligible articles, from which 8 clinical registries reporting on dry eye parameters were identified. One registry included patients with a diagnosis of dry eye. The remaining 7 registries included patients from a nationwide administrative ophthalmic database (n = 1), Sjögren syndrome (n = 4), glaucoma (n = 1), or were monozygotic and dizygotic twins (n = 1), who were evaluated for DED. Five of the registries were actively collecting data. Conclusions: Most of the registries identified in this review evaluated aqueous deficient dry eye; however, the most common type of dry eye in the general population is evaporative. Few registries also collected recommended dry eye clinical assessment. A well-designed clinical registry for DED that engages international eye care clinicians has the potential to vastly contribute to addressing pivotal gaps in understanding this highly prevalent disease.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Khoo2021,

title = {Microbial Keratitis After Corneal Collagen Cross-Linking for Corneal Ectasia},

author = {Pauline Khoo and Maria Cabrera-Aguas and Stephanie L. Watson},

doi = {10.1097/apo.0000000000000379},

issn = {2162-0989},

year  = {2021},

date = {2021-07-00},

journal = {Asia-Pacific Journal of Ophthalmology},

volume = {10},

number = {4},

pages = {355–359},

publisher = {Elsevier BV},

keywords = {Asia-Pacific Journal of Ophthalmology, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2021b,

title = {Comparative Efficacy and Safety of Standard Versus Accelerated Corneal Crosslinking for Keratoconus: 1-Year Outcomes From the Save Sight Keratoconus Registry Study},

author = {Himal Kandel and Vuong Nguyen and Alex C. Ferdi and Aanchal Gupta and Marco Abbondanza and Laurence Sullivan and Andrew Apel and Stephanie L. Watson},

doi = {10.1097/ico.0000000000002747},

issn = {0277-3740},

year  = {2021},

date = {2021-00-00},

journal = {Cornea},

volume = {40},

number = {12},

pages = {1581–1589},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The aim of this study was to compare the efficacy and safety of standard [Ultraviolet (UV) light power: 3 mW/cm 2 , duration: 30 minutes] versus accelerated (UV power: 9 mW/cm 2 , duration: 10 minutes) corneal crosslinking (CXL) for stabilizing keratoconus. Methods: A total of 684 eyes (555 patients; mean age ± SD, 25.0 ± 7.9 years; women, 30.6%) from 24 international sites with epithelium-off CXL for keratoconus had follow-up data at 1-year and met the inclusion criteria. Two hundred sixty-six eyes (228 patients) had undergone standard CXL, and 418 eyes (327 patients) had undergone accelerated CXL. The outcome measures included changes in visual acuity, keratometry, minimum corneal thickness, and frequency of adverse events. The outcomes were compared using mixed-effects regression models adjusted for age, sex, visual acuity, keratometry, pachymetry, doctor, practice, and eye laterality. Results: The adjusted mean changes (95% confidence interval) in outcomes were similar in standard and accelerated CXL in visual acuity [6.5 (2.0, 11.1) versus 5.5 (0.4, 10.6) logMAR letters, respectively], Kmax [−0.9 (−1.4, −0.3) D versus −1.2 (−1.9, −0.4) D, respectively], K2 [−0.4 (−0.9, 0.2) D versus −0.4 (−1.1, 0.3), D respectively], or minimum corneal thickness [−13.3 (−20.3, −6.3) μm versus −16.6 (−24.5, −8.6) μm, respectively] (all P > 0.05). The frequency of adverse events at the 12-month visit was also similar between the CXL groups (standard, 8.3% vs. accelerated, 5.5%; P = 0.21). Conclusions: This real-world observational study found that both standard and accelerated CXL were similarly safe and effective in stabilizing keratoconus at 1-year postsurgery in the real-world setting. The findings support the adoption of accelerated CXL for time and convenience.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Ferdi2019,

title = {The Impact on Work Patterns of Implementing the Save Sight Keratoconus Registry in the Hospital Setting},

author = {Alex C. Ferdi and Vuong Nguyen and Chameen Samarawickrama and Alex Hamilton and Season Yeung and Stephanie L. Watson},

doi = {10.1097/ico.0000000000002159},

issn = {0277-3740},

year  = {2020},

date = {2020-00-00},

journal = {Cornea},

volume = {39},

number = {4},

pages = {451–456},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The adoption of clinical registries has the potential to improve outcomes, while reducing the costs of health care. We sought to evaluate the changes in workflow that occurred with implementation of the Save Sight Keratoconus Registry (SSKR) in corneal clinics. Methods: A prospective time–motion study and a clinician survey were conducted. The timing of clinic consultations was recorded before and after implementation of the SSKR. The activities were assigned into 3 main categories: 1) direct patient care (eg, talking to, examining), 2) indirect patient care (record keeping), and 3) indirect patient care (reading). Results: Overall, there was no change in average time spent per patient with or without the SSKR; 12.3 (5.3 SD) versus 12.1 (5.3 SD) minutes, respectively},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}

@article{Kandel2019,

title = {Psychometric Properties of the Keratoconus Outcomes Research Questionnaire: A Save Sight Keratoconus Registry Study},

author = {Himal Kandel and Konrad Pesudovs and Alex Ferdi and Richard Mills and Jern Yee Chen and Adam Watson and Alexander Poon and Laura E. Downie and Stephanie L. Watson},

doi = {10.1097/ico.0000000000002169},

issn = {0277-3740},

year  = {2020},

date = {2020-00-00},

journal = {Cornea},

volume = {39},

number = {3},

pages = {303–310},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {Purpose: The aim of this study was to evaluate the psychometric properties of the Keratoconus Outcomes Research Questionnaire (KORQ) in patients enrolled in the Save Sight Keratoconus Registry. Methods: A cross-sectional study was conducted utilizing prospectively collected web-based registry data. The psychometric properties of the KORQ were assessed using both classical test theory and Rasch analysis. Andrich group rating scale variant of the Rasch analysis was conducted using Winsteps software, Version 3.92.1. Results: The KORQ was completed by 189 patients with keratoconus (men, 67.7%; white, 69.8%; median age 29 years; better eye median values: visual acuity, 75 LogMAR letters; Kmax, 51.3 D; K2, 46.5 D; thinnest pachymetry, 485 μm). Cronbach's α for the “Activity Limitation” and “Symptoms” scales were 0.95 and 0.91, respectively, with both scales free from floor or ceiling effects. On Rasch analysis, the category thresholds were ordered and well-spaced for both scales. The Activity Limitation scale had excellent psychometric properties including person separation index (3.6), unidimensionality (variance explained, 65.4%), fit statistics (<1.3 MnSq), and measurement range (3.6 logits). Similarly, the Symptoms scale had satisfactory psychometric properties including person separation index (2.5), unidimensionality (variance explained, 54.3%), fit statistics (<1.30 MnSq except for 1 item), and measurement range (2.0 logits). Both scales were well targeted to the population and free of differential item functioning. Conclusions: The KORQ is a psychometrically robust patient-reported outcome measure for evaluating quality of life parameters in keratoconus. It enables routine collection and monitoring of meaningful patient-reported outcome data in clinical settings, including registries.},

keywords = {Cornea, Fight Corneal Blindness},

pubstate = {published},

tppubtype = {article}

}