Abstract:
PURPOSE:To describe the motivations, expectations, and other factors men with X-linked retinoschisis (XLRS) consider when making decisions to participate in an early phase ocular gene therapy clinical trial. DESIGN:Qualitative interview study. METHODS:Men with XLRS who were considering participation in a phase I/IIa ocular gene therapy clinical trial at the National Eye Institute were eligible for this study. Trial participants (n = 9) were interviewed prior to receiving the gene transfer and then at 3 and 12 months later. Trial participation decliners (n = 2) were interviewed at an initial visit and 12 months later. Those screened for the trial and found ineligible (n = 2) were interviewed at an initial visit only. Interviews were transcribed, coded, and analyzed thematically. RESULTS:Interview participants described decision making factors as risk-benefit assessments, personal intuition, trust in the study team, and religious faith. Altruism and the potential for therapeutic benefit were the main motives for trial participation, whereas the uncertainty of risks and benefits was the reason 2 men declined participation. Although most participants hoped for direct benefit, no one expected to benefit. Almost all interview participants considered their decision straightforward and were satisfied with their decision when interviewed over time. Meaningful relationships with the study team and perceived secondary benefits to participation contributed to positive trial experiences. CONCLUSIONS:Engaging prospective research participants in a discussion about their hopes, expectations, and personal factors provides a more complete understanding of patient decision making and may help support informed choices to participate in clinical trials for XLRS.
journal_name
Am J Ophthalmoljournal_title
American journal of ophthalmologyauthors
Turriff A,Blain D,Similuk M,Biesecker B,Wiley H,Cukras C,Sieving PAdoi
10.1016/j.ajo.2019.03.009subject
Has Abstractpub_date
2019-08-01 00:00:00pages
90-96eissn
0002-9394issn
1879-1891pii
S0002-9394(19)30107-2journal_volume
204pub_type
临床试验,杂志文章abstract:PURPOSE:To characterize spontaneous dislocation of the fluocinolone acetonide sustained release implant (Retisert; Bausch & Lomb) drug pellet from its strut. DESIGN:Retrospective, observational case series. METHODS:The medical records of 224 patients in whom 407 fluocinolone acetonide implants were placed by either o...
journal_title:American journal of ophthalmology
pub_type: 杂志文章,多中心研究
doi:10.1016/j.ajo.2015.01.031
更新日期:2015-05-01 00:00:00
abstract:PURPOSE:To investigate the clinical and electrophysiologic natural history of Stargardt disease and correlate with the genotype. DESIGN:Cohort study of 59 patients. METHODS:Clinical history, examination, and electrophysiologic assessment were undertaken in a longitudinal survey. Patients were classified into 3 groups...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2013.01.018
更新日期:2013-06-01 00:00:00
abstract::Corneal epithelial iron lines commonly occur, and their shape is characteristically influenced by the underlying corneal surface topography. We studied a pattern of iron deposition, observed after implantation of the Intrastromal Corneal Ring (KeraVision, Inc., Santa Clara, California). In five of ten patients undergo...
journal_title:American journal of ophthalmology
pub_type: 临床试验,杂志文章
doi:10.1016/s0002-9394(14)71353-4
更新日期:1993-09-15 00:00:00
abstract::Self-inflicted mutilation of the eyes is an uncommon but fairly distinct entity. Patients are typically young men; they often have criminal records and histories of drug abuse. Underlying schizophrenia is a common feature. The patients frequently suffer from castration fears, oedipal conflicts, repressed homosexual im...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(81)90070-2
更新日期:1981-05-01 00:00:00
abstract:PURPOSE:To describe a simplified new technique for repositioning and attaching a suture to the haptic of a displaced posterior chamber intraocular lens (IOL). METHODS:We describe a double-knot technique for repositioning and transscleral suture fixation of a subluxed posterior chamber IOL after penetrating keratoplast...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(99)00244-5
更新日期:1999-11-01 00:00:00
abstract::In seven eyes of six patients (four men and two women, 55 to 72 years old), with macular edema associated with severe carotid artery stenosis, the ipsilateral carotid obstruction was 90% or more. Concomitant fundus signs, such as midperipheral retinal hemorrhages, retinal arterial narrowing, and neovascularization of ...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(86)90071-1
更新日期:1986-10-15 00:00:00
abstract:PURPOSE:We investigated whether opsin mislocalization occurs in photoreceptors in a female carrier of X-linked retinitis pigmentosa with a Gly436Asp mutation in the retinitis pigmentosa GTPase regulator gene (RPGR). DESIGN:Histologic findings in autopsy eyes from a carrier were compared with those from a normal female...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2006.03.061
更新日期:2006-09-01 00:00:00
abstract::A 34-year-old man had a six-month history of bilateral visual loss that was secondary to cystoid macular edema, which was assumed to be secondary to neurosyphilis on the basis of cerebrospinal fluid serology, cell count, and protein. Good visual acuity was recovered with systemic corticosteroids only after they were u...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(79)90747-5
更新日期:1979-07-01 00:00:00
abstract:PURPOSE:To assess the state of knowledge of photoreceptor dystrophies. METHODS:The current literature concerning photoreceptor dystrophies is reviewed, and their potential impact on concepts of pathogenesis of disease and clinical practice is assessed. RESULTS:As a result of cooperative investigative work between res...
journal_title:American journal of ophthalmology
pub_type: 杂志文章,评审
doi:10.1016/s0002-9394(14)70212-0
更新日期:1995-05-01 00:00:00
abstract::A 35-year-old woman with Engelmann's disease and systemic lupus erythematosus developed spontaneous luxation of the globe and glaucoma. Radiological studies demonstrated increased sclerosis of the orbital bones and decreased orbital volumes, the probable cause of the luxation and the glaucoma. The glaucoma was control...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(77)90917-5
更新日期:1977-06-01 00:00:00
abstract:PURPOSE:To assess the clinical outcomes of conventional and wavefront-guided myopic laser in situ keratomileusis (LASIK) retreatment. DESIGN:Retrospective, nonrandomized case series. METHODS:The study comprised a cohort of 97 eyes having LASIK retreatment for residual myopia after primary LASIK. The eyes were divided...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2005.11.011
更新日期:2006-04-01 00:00:00
abstract::Membranoproliferative glomerulonephritis type II is specifically associated with the presence of dense deposits in the basement membrane of Bruch's membrane, which result in lesions similar to basal laminar drusen, exudative drusen, and retinal pigment epithelial detachments. In advanced stages of this dense-deposit r...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(14)71397-2
更新日期:1993-10-15 00:00:00
abstract::We reviewed the records of 74 patients with exfoliation syndrome. Patients with exfoliation syndrome represented 12% of the current Glaucoma Clinic population. There were 40 unilateral and 34 bilateral cases. Thirteen percent of the patients who originally had unilateral exfoliation later developed exfoliation in the ...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(80)90054-9
更新日期:1980-04-01 00:00:00
abstract:PURPOSE:To describe the use of anterior segment optical coherence tomography (AS-OCT) to clarify the position and patency of aqueous shunt devices in the anterior chamber of eyes where corneal edema or tube position does not permit a satisfactory view. DESIGN:Noncomparative observational case series. METHODS:Four cas...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2007.02.023
更新日期:2007-06-01 00:00:00
abstract:PURPOSE:To report the effect of repeated corneal swabbing in patients with microsporidial keratoconjunctivitis. DESIGN:Retrospective noncomparative case series. METHODS:Sixteen eyes of 14 healthy patients with microsporidial keratoconjunctivitis were diagnosed based on the detection of microsporidia in corneal scrapi...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2012.06.002
更新日期:2012-12-01 00:00:00
abstract::Two patients underwent vitrectomy with the use of intraocular gas. In one patient the cornea decompensated because of lens-cornea contact and in the second patient a surgical technique devised to protect the cornea from lens contact was used successfully. The technique consisted of injecting a smaller gas bubble into ...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(80)90284-6
更新日期:1980-05-01 00:00:00
abstract::Lamellar keratoplasty was done in 18 eyes with keratoconus in an attempt to obtain a more satisfactory postoperative refractive error than that after penetrating keratoplasty. The refractive error after lamellar keratoplasty was better than that after 7.5-mm penetrating keratoplasties, but the vision was not as good. ...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(77)90563-3
更新日期:1977-04-01 00:00:00
abstract::A 71-year-old woman had von Willebrand's disease, an inheritable abnormality of platelet activity, and developed diabetic retinal neovascularization. A 59-year-old man had a myeoloproliferative disorder with thrombocythemia but may have had retinal changes before the development of his platelet dysfunction. The occurr...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(79)90749-9
更新日期:1979-07-01 00:00:00
abstract::We investigated albumin and IgG concentrations in the aqueous humor of 41 patients before intracapsular cataract extraction (primary samples) and at the end of surgery (secondary samples). Albumin and IgG concentrations were determined in all samples by means of a quantitative fluoroimmunoassay. A short-term topical a...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(14)71914-2
更新日期:1983-12-01 00:00:00
abstract::Fifteen patients with malignant epithelial tumors of the conjunctiva were treated with beta-ray ocular applicators filled with radioactive strontium and yttrium (90Sr/90Y). Histologic examination confirmed the diagnosis. There were ten squamous cell carcinomas, four carcinomas in situ, and one case of epidermidalizati...
journal_title:American journal of ophthalmology
pub_type: 杂志文章,评审
doi:10.1016/0002-9394(76)90731-5
更新日期:1976-02-01 00:00:00
abstract:PURPOSE:To evaluate the effect of the blue light-filter intraocular lenses (IOLs) in vitrectomy combined with cataract surgery, focusing on the surgeon's ability to perform specific vitreoretinal procedures and on the patients' outcome. DESIGN:Randomized clinical trial. METHODS:Sixty patients, recruited from our outp...
journal_title:American journal of ophthalmology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.ajo.2007.10.021
更新日期:2008-03-01 00:00:00
abstract::T-cell and B-cell lymphocyte subpopulations, monocytes, granulocytes, and immunoglobulin receptors were measured with monoclonal antibodies and flow cytometric techniques in the peripheral blood of 266 patients with posterior uveal melanoma before therapy. Statistically significant differences were found in T-helper/i...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(86)90587-8
更新日期:1986-02-15 00:00:00
abstract::A study of ten patients (six girls and four boys ranging in age from 17 months to 9 1/2 years) with congenital third nerve palsies showed that not all cases are benign without other signs of focal neurologic damage. Six of the ten children showed some degree of pupillary involvement, five had signs of oculomotor synki...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(84)90629-9
更新日期:1984-03-01 00:00:00
abstract::We modified trabeculo-iridocyclosclerectomy in a technique for en bloc excision of anterior uveal tumor. A trabeculectomy-type of approach was used, which allowed excision of a rectangular block of sclera, cornea, and trabeculum with attached uveal tissue containing the tumor. ...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/0002-9394(79)90657-3
更新日期:1979-09-01 00:00:00
abstract:PURPOSE:To determine the spectrum of conjunctival flora and the antibiotic susceptibility profiles of patients undergoing cataract surgery at a Midwestern university. DESIGN:Prospective in vitro laboratory investigation of a patient cohort. METHODS:Conjunctival cultures were obtained from patients undergoing cataract...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2012.06.024
更新日期:2013-01-01 00:00:00
abstract:PURPOSE:To investigate whether use of donors predisposed by corneal collagen cross-linking (CXL) reduced myopic refractive errors for keratoconic eyes after penetrating keratoplasty (PK). DESIGN:Randomized controlled trial. METHODS:One hundred sixteen eyes of 116 patients with keratoconus from Zhongshan Ophthalmic Ce...
journal_title:American journal of ophthalmology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.ajo.2017.10.003
更新日期:2017-12-01 00:00:00
abstract:PURPOSE:To determine the association between anticytomegalovirus (CMV) maintenance therapy after immune recovery and immune recovery uveitis in acquired immunodeficiency syndrome (AIDS) patients on highly active antiretroviral therapy (HAART). DESIGN:Observational cohort study. METHODS:Data were obtained on AIDS pati...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(03)00335-0
更新日期:2003-10-01 00:00:00
abstract:PURPOSE:To report a case of progressive necrotizing fasciitis of the face following acute dacryocystitis. DESIGN:Interventional case report. METHODS:A 60-year-old woman presented with left acute dacryocystitis with abscess formation that had ruptured; a small wound remained. Erythematous swelling of the left eyelid a...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(03)00089-8
更新日期:2003-07-01 00:00:00
abstract:PURPOSE:To evaluate outcomes of patients treated with intensive intravitreal therapy and to describe the evolution of quantitative real-time polymerase chain reaction (qPCR) in patients treated for acute retinal necrosis (ARN) syndrome. DESIGN:Retrospective observational case series. METHODS:This study included 25 ey...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/j.ajo.2019.08.007
更新日期:2019-12-01 00:00:00
abstract:PURPOSE:To report a group of patients with symptoms of pain, strabismus, sensation of orbital fullness, and presence of a subconjunctival mass many years after successful scleral buckling surgery using hydrogel explants. DESIGN:We present an interventional consecutive case series of patients who underwent scleral buck...
journal_title:American journal of ophthalmology
pub_type: 杂志文章
doi:10.1016/s0002-9394(03)00873-0
更新日期:2004-01-01 00:00:00