The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

Study Design: International Classification of Functioning, Disability and Health (ICF) linking study.

Objective: Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS).

Responsiveness of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0: An international longitudinal study.

Context/objective: Examine the sensitivity of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0 (QoL-BDS V2.0) to reflect changes in mobility and secondary health conditions (SHCs) between inpatient rehabilitation and one-year follow-up.

International spinal cord injury socio-demographic basic data set (version 1.0).

Study Design: Consensus based on the literature.

Objective: Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0).

Feasibility study of mobile phone photography as a possible outcome measure of systemic sclerosis-related digital lesions.

Objective: Clinical trials assessing systemic sclerosis (SSc)-related digital ulcers have been hampered by a lack of reliable outcome measures of healing. Our objective was to assess the feasibility of patients collecting high-quality mobile phone images of their digital lesions as a first step in developing a smartphone-based outcome measure.

Methods: Patients with SSc-related digital (finger) lesions photographed one or more lesions each day for 30 days using their smartphone and uploaded the images to a secure Dropbox folder.

Association of Autologous Tumor Lysate-Loaded Dendritic Cell Vaccination With Extension of Survival Among Patients With Newly Diagnosed and Recurrent Glioblastoma: A Phase 3 Prospective Externally Controlled Cohort Trial.

Importance: Glioblastoma is the most lethal primary brain cancer. Clinical outcomes for glioblastoma remain poor, and new treatments are needed.

Objective: To investigate whether adding autologous tumor lysate-loaded dendritic cell vaccine (DCVax-L) to standard of care (SOC) extends survival among patients with glioblastoma.

International Spinal Cord Injury Core Data Set (version 3.0)-including standardization of reporting.

Study Design: Expert opinion, feedback, revisions and final consensus.

Objectives: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting.

Setting: International.

Anti-transcription intermediary factor 1-gamma IgG2 isotype is associated with cancer in adult dermatomyositis: an ENMC multinational study.

Objective: To assess the role of the anti-TIF1γ auto-antibody (aAb) IgG2 isotype as a biomarker of cancer in anti-TIF1γ aAb-positive adult DM.

Methods: International multicentre retrospective study with the following inclusion criteria: (i) diagnosis of DM according to ENMC criteria; (ii) presence of anti-TIF1γ IgG aAb determined using an in-house addressable laser bead immunoassay (ALBIA) from cryopreserved serums sampled at time of DM diagnosis and (iii) available baseline characteristics and follow-up data until the occurrence of cancer and/or a minimum follow-up of 1 year for patients without known cancer at diagnosis. Detection and quantification of anti-TIF1γ IgG2 aAb was done using the in-house ALBIA.

Using Clinical Vignettes and a Modified Expert Delphi Panel to Determine Parameters for Identifying Non-Traumatic Spinal Cord Injury in Health Administrative and Electronic Medical Record Databases.

Objective: To obtain expert consensus on the parameters and etiologic conditions required to retrospectively identify cases of non-traumatic spinal cord injury (NTSCI) in health administrative and electronic medical record (EMR) databases based on the rating of clinical vignettes.

Design: A modified Delphi process included 2 survey rounds and 1 remote consensus panel. The surveys required the rating of clinical vignettes, developed after chart reviews and expert consultation.

Rasch Analysis of the International Quality of Life Basic Data Set Version 2.0.

Objective: To examine the internal construct validity of the International Spinal Cord Injury Quality of Life Basic Data Set Version 2.0 (QoL-BDS V2.0) and compare this with the internal construct validity of the original version of the QoL-BDS.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

Study Design: Mixed methods inquiry using cognitive interviews and thematic content analysis.

Objectives: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items.

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

Purpose: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI.

Methods: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

Study Design: International multicentre cross-sectional study.

Objectives: To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI.

Setting: Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age.

Solitary Leptomeningeal Recurrence From Prostate Adenocarcinoma After Treatment With Cytotoxic Gene Therapy, Radiation Therapy, and Androgen Deprivation Therapy.

Purpose: Leptomeningeal disease in prostate adenocarcinoma is very rare. Solitary leptomeningeal recurrence from prostate adenocarcinoma has only been previously reported once in the published literature.

Methods And Materials: A 63-year-old man with high-risk prostate cancer was treated in a phase I-II trial with androgen deprivation, radiation therapy, and cytotoxic gene therapy.

Altering the rehabilitation environment to improve stroke survivor activity: A Phase II trial.

Background: Environmental enrichment involves organization of the environment and provision of equipment to facilitate engagement in physical, cognitive, and social activities. In animals with stroke, it promotes brain plasticity and recovery.

Aims: To assess the feasibility and safety of a patient-driven model of environmental enrichment incorporating access to communal and individual environmental enrichment.

A longitudinal examination of the frequency and correlates of self-reported neurobehavioural disability following stroke.

Purpose: To determine the frequency, impact, and factors associated with self-reported neurobehavioural disability (NBD) in individuals with stroke. A secondary aim was to examine the course of self-reported NBD over time and associations with outcomes.

Methods: Eighty-seven participants admitted for inpatient rehabilitation post-stroke completed the St Andrew's-Swansea Neurobehavioural Outcome Scale.

The evidence supporting single-use intermittent catheters in people with spinal cord injury.

Intermittent catheterization (IMC) is the accepted evidence-based best practice for bladder management in people with voiding dysfunction due to neurogenic bladder. The two methods for performing IMC over the decades since this practice was introduced are reuse and single-use catheters. There are perceived advantages and disadvantages of each method of performing IMC.

Correction: International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Intermittent catheterization with single- or multiple-reuse catheters: clinical study on safety and impact on quality of life.

Purpose: Intermittent catheterization (IC) is a proven effective long-term bladder management strategy for individuals who have lower urinary tract dysfunction. This study provides clinical evidence about multiple-reuse versus single-use catheterization techniques and if catheter choice can have an impact on health-related quality of life (HRQoL).

Method: A prospective, multi-center, clinical trial studied patients who currently practiced catheter reuse, and who agreed to prospectively evaluate single-use hydrophilic-coated (HC) (i.

International Comparison of Vocational Rehabilitation for Persons With Spinal Cord Injury: Systems, Practices, and Barriers.

Employment rates among people with spinal cord injury or spinal cord disease (SCI/D) show considerable variation across countries. One factor to explain this variation is differences in vocational rehabilitation (VR) systems. International comparative studies on VR however are nonexistent.

Validation of a clinical prediction rule for ambulation outcome after non-traumatic spinal cord injury.

Study Design: Prospective cohort study.

Objectives: To validate a Clinical Prediction Rule (CPR) for ambulation in a non-traumatic spinal cord injury population (NTSCI).

Setting: Tertiary spinal rehabilitation inpatient service, Melbourne, Australia.

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.

Study Design: International focus groups.

Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set.

Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation.

The myositis clinical phenotype associated with anti-Zo autoantibodies: a case series of nine UK patients.

Objectives: It has been over 10 years since the first report of autoantibodies directed against phenylalanyl tRNA synthetase (anti-Zo) in a patient with features of the anti-synthetase syndrome. In that time no further cases have been published. Here we aim to characterize more fully the clinical phenotype of anti-Zo-associated myositis by describing the clinical features of nine patients.

Satisfaction with life, health and well-being: comparison between non-traumatic spinal cord dysfunction, traumatic spinal cord injury and Australian norms.

Study Design: Cross-sectional survey.

Objectives: The objective of this study is to compare self-reported satisfaction with life, and self-reported health and well-being of people with NTSCD, to that of people with TSCI, and with Australian population.

Setting: Victoria, Australia.