Lessons from 10 years' experience running the Fiom KID-DNA database, a voluntary DNA-linking register for donor-conceived people and donors in The Netherlands.

Worldwide, there is increasing acknowledgment of the importance of getting access to ancestry information. More and more countries facilitate access to this information through law changes and voluntary contact-services. In the Netherlands, the state-funded Fiom KID-DNA database was established in 2010 to facilitate information and/or contact exchange between those people who are genetically related as a result of donor-assisted conception.

The Hip Disability and Osteoarthritis Outcome Score-Physical Function Shortform Does Not Adequately Represent Physical Functioning in Patients Undergoing Total Hip Arthroplasty.

Objectives: A frequently used patient-reported outcome measure for assessing physical functioning in patients with hip problems is the 5-item Hip Disability and Osteoarthritis Outcome Score-Physical Function Shortform (HOOS-PS). Nevertheless, its content validity (whether this instrument adequately reflects the construct of physical functioning) is unknown. This study aimed to assess the content validity of the HOOS-PS.

Content Validity of Patient-Reported Outcome Measures Developed for Assessing Health-Related Quality of Life in People with Type 2 Diabetes Mellitus: a Systematic Review.

Purpose Of Review: We aimed to systematically evaluate the content validity of patient-reported outcome measures (PROMs) specifically developed to measure (aspects of) health-related quality of life (HRQOL) in people with type 2 diabetes. A systematic review was performed in PubMed and Embase of PROMs measuring perceived symptoms, physical function, mental function, social function/participation, and general health perceptions, and that were validated to at least some extent. Content validity (relevance, comprehensiveness, and comprehensibility) was evaluated using COSMIN methodology.

Short report: Performance evaluation of the Idylla™ KRAS and EGFR mutation tests on paraffin-embedded cytological NSCLC samples.

Background: Quick and reliable testing of EGFR and KRAS is needed in non-small cell lung cancer (NSCLC) to ensure optimal decision-making for targeted therapy. The Idylla™ platform was designed for Formalin-Fixed Paraffin-Embedded (FFPE) tissue sections but recently several studies were published that evaluated its potential for cytological specimens. This study aimed to validate the Idylla™ platform for the detection of EGFR/KRAS mutations in cytological NSCLC samples prepared as cytoblocks using AGAR and paraffin embedding.

Systematic review and meta-analysis of measurement properties of the Hip disability and Osteoarthritis Outcome Score - Physical Function Shortform (HOOS-PS) and the Knee Injury and Osteoarthritis Outcome Score - Physical Function Shortform (KOOS-PS).

Objective: The aim of this systematic review and meta-analysis was to evaluate all evidence on measurement properties of the Hip disability and Osteoarthritis Outcome Score - Physical function Shortform (HOOS-PS) and the Knee Injury and Osteoarthritis Outcome Score - Physical function Shortform (KOOS-PS).

Design: This study was conducted according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline for systematic reviews of PROMs. MEDLINE, EMBASE, The Cochrane Library, CINAHL and PsychINFO through February 2019 were searched.

Generic outcome set for the international registry on Laser trEAtments in Dermatology (LEAD): a protocol for a Delphi study to achieve consensus on to measure.

Introduction: While laser technology has expanded the armamentarium of treatment for various skin diseases during the past years, heterogeneity in study outcomes hampers comparability and appropriate evidence synthesis. Part of these issues can be addressed by developing a generic outcome set. Using the Delphi method, this study aims to seek consensus between key stakeholders on relevant generic outcomes ( to measure) for implementation in the international registry on Laser trEAtments in Dermatology (LEAD).

Methods used in the selection of instruments for outcomes included in core outcome sets have improved since the publication of the COSMIN/COMET guideline.

Objectives: Once a core outcome set (COS) has been defined, it is important to achieve consensus on how these outcomes should be measured. The aims of this systematic review were to gain insight into the methods used to select outcome measurement instruments and to determine whether methods have improved following the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN)/Core Outcome Measures in Effectiveness Trials (COMET) guideline publication.

Study Design And Setting: Eligible articles, which were identified from the annual COMET systematic review, concerned any COS development studies that provided a recommendation on how to measure the outcomes included in the COS.

Measuring atopic eczema symptoms in clinical practice: The first consensus statement from the Harmonising Outcome Measures for Eczema in clinical practice initiative.

Background: Measuring patient-centered outcomes in clinical practice is valuable for monitoring patients and advancing real-world research. A new initiative from the Harmonising Outcome Measures for Eczema (HOME) group aims to recommend what might be recorded for atopic eczema patients in routine clinical care.

Objectives: Prioritize outcome domains to measure atopic eczema in clinical practice and select valid and practical outcome measurement instruments for the highest-priority domain.

Outcome measurement instruments for peripheral vascular malformations and an assessment of the measurement properties: a systematic review.

Purpose: The Outcome measures for vascular malformation (OVAMA) group reached consensus on the core outcome domains for the core outcome set (COS) for peripheral vascular malformations (venous, lymphatic and arteriovenous malformations). However, it is unclear which instruments should be used to measure these domains. Therefore, our aims were to identify all outcome measurement instruments available for vascular malformations, and to evaluate their measurement properties.

A systematic review of outcome reporting in laser treatments for dermatological diseases.

The standardization of outcome reporting is crucial for interpretation and comparison of studies related to laser treatment of skin disorders. In collaboration with the Cochrane Skin-Core Outcome Set Initiative (CS-COUSIN), a procedure has been proposed to find consensus on the most important generic outcome domains (what to measure) for implementation in the international Laser TrEAtment in Dermatology (LEAD) registry. As the first step in the development of a generic outcome set for the LEAD registry, we undertook a systematic review to identify outcomes, outcome measurement instruments, methods and definitions reported in recently published literature of laser treatments for skin disorders.

Performance properties of health-related measurement instruments in whiplash: systematic review protocol.

Background: Whiplash is a common traumatic cervical injury which is most often a consequence of rear-end motor vehicle accidents. It has been estimated that up to 50% of the whiplash patients suffer from chronic symptoms, resulting in extensive individual and societal burden. Several measurement instruments are used for initial assessment of whiplash and evaluation of response to treatment.

Clinical visible signs of disease activity in vitiligo: a systematic review and meta-analysis.

Vitiligo is an unpredictable depigmenting disorder for which a static method to assess disease activity is lacking. Presence of certain skin manifestations may be indicative of disease activity. Here, we evaluated the current evidence for an association between clinical signs and reported disease activity in vitiligo.

Mismatch repair deficiency as a predictive marker for response to adjuvant radiotherapy in endometrial cancer.

Background: Mismatch repair (MMR) deficiency is found in 20 to 40% of endometrial cancers (ECs) and was recently identified as a discerning feature of one of the four prognostic subgroups identified by The Cancer Genome Atlas. There is accumulating evidence that MMR proteins are involved in the DNA repair processes following radiotherapy. We investigated the predictive value of MMR status for response to adjuvant radiotherapy in patients with stage IB/II, grade 3 endometrioid endometrial cancer (EEC).

Measuring positive health: for now, a bridge too far.

Objectives: Huber et al. introduced a new concept 'positive health', defined as 'the ability to adapt and self-manage in the face of social, physical and emotional challenges' and suggested a conceptual model comprising six domains covering 32 aspects. Our aim was to generate items and pilot test an outcome measurement instrument for measuring 'positive health' in Dutch adult citizens.

Validation of a physician global assessment tool for vitiligo extent: Results of an international vitiligo expert meeting.

Currently, vitiligo lacks a validated Physician Global Assessment (PGA) for disease extent. This PGA can be used to stratify and interpret the numeric scores obtained by the Vitiligo Extent Score (VES). We investigated the interrater reliability of a 5-point PGA scale during an international vitiligo workshop.

Navigating the landscape of core outcome set development in dermatology.

The development of core outcome sets (COSs; ie, a minimum set of core outcomes that should be measured and reported in all trials or in clinical practice for a specific condition) in dermatology is increasing in pace. A total of 44 dermatology-related COS projects have been registered in the online Core Outcome Measures in Effectiveness Trials database (http://www.comet-initiative.

Cochrane Reviews and Dermatological Trials Outcome Concordance: Why Core Outcome Sets Could Make Trial Results More Usable.

Evidence-based health care requires that relevant outcomes for patients are included in clinical trials investigating treatment effects, allowing subsequent systematic reviews to summarize all relevant evidence to guide clinical practice. Currently, no gold standard of outcome choice for dermatology trials and reviews exists. We systematically assessed concordance between efficacy outcomes in a random sample of 10 Cochrane Skin systematic reviews and the 220 dermatology trials included.

Measurement properties of the OARSI core set of performance-based measures for hip osteoarthritis: a prospective cohort study on reliability, construct validity and responsiveness in 90 hip osteo-arthritis patients.

Background and purpose - Improvement of physical function is one of the main treatment goals in severe hip osteoarthritis (OA) patients. The Osteoarthritis Research Society International (OARSI) has identified a core set of performance-based tests to assess the construct physical function: 30-s chair stand test (30-s CST), 4x10-meter fast-paced walk test (40 m FPWT), and a stair-climb test. Despite this recommendation, available evidence on the measurement properties is limited.

Reference method for digital surface measurement of target lesions in vitiligo: a comparative analysis.

Background: Objective measurement of target lesions in vitiligo is important for clinical practice and trials, yet no preferred tool has been defined. Reported digital tools have shortcomings related to feasibility aspects and often lack information on validity, reliability and responsiveness. Moreover, studies are not yet based on ultraviolet (UV) photography.

Recommendations on the most suitable quality-of-life measurement instruments for bariatric and body contouring surgery: a systematic review.

Objective: The objective of this study is to systematically assess the quality of existing patient-reported outcome measures developed and/or validated for Quality of Life measurement in bariatric surgery (BS) and body contouring surgery (BCS).

Methods: We conducted a systematic literature search in PubMed, EMBASE, PsycINFO, CINAHL, Cochrane Database Systematic Reviews and CENTRAL identifying studies on measurement properties of BS and BCS Quality of Life instruments. For all eligible studies, we evaluated the methodological quality of the studies by using the COnsensus-based Standards for the selection of health Measurement INstruments checklist and the quality of the measurement instruments by applying quality criteria.

Report from the fifth international consensus meeting to harmonize core outcome measures for atopic eczema/dermatitis clinical trials (HOME initiative).

This is the report from the fifth meeting of the Harmonising Outcome Measures for Eczema initiative (HOME V). The meeting was held on 12-14 June 2017 in Nantes, France, with 81 participants. The main aims of the meeting were (i) to achieve consensus over the definition of the core domain of long-term control and how to measure it and (ii) to prioritize future areas of research for the measurement of the core domain of quality of life (QoL) in children.