Implementing public involvement standards in cerebral palsy register research

BACKGROUND: In 2018, the National Institute for Health Research launched Draft Standards for Public Involvement in Research. The Northern Ireland Cerebral Palsy Register (NICPR) was competitively selected as a “test-bed” project to pilot the Draft Standards over a one-year period. AIM: This perspective paper aims to describe the NICPR's experience of piloting the Draft Standards for Public Involvement in Research, highlighting successes and challenges. METHOD: Three of the six Draft Standards were piloted from April 2018 to April 2019: Standard 2 “working together”, Standard 4 “communications” and Standard 5, “impact”. RESULTS: Implementation of Standard 2 resulted in formation of a dedicated Public Involvement Group. Standard 4 was implemented by revision of the NICPR's Privacy Notice and development of the NICPR website. Standard 5 was not implemented during the test-bed pilot period. DISCUSSION: Benefits of use of the Draft Standards in cerebral palsy register research included development of relationships, improving quality, accessibility and relevance of NICPR materials, increasing skills and confidence, networking opportunities, advocating for others and feeling empowered to shape cerebral palsy research. Challenges included administrative issues, absence of dedicated and sustained funding, limitations in the availability and applicability of public involvement training and the time required for meaningful public involvement. CONCLUSIONS: Standards for Public Involvement provide a useful framework for structuring and embedding meaningful public involvement. Sustained, authentic public involvement in cerebral palsy register research ensures that people affected by the condition are empowered to engage, inform, develop and lead research that meets their needs

Roles of fibrin α- and γ-chain specific cross-linking by FXIIIa in fibrin structure and function

Factor XIII is responsible for the cross-linking of fibrin γ-chains in the early stages of clot formation, whilst α-chain cross-linking occurs at a slower rate. Although γ- and α-chain cross-linking was previously shown to contribute to clot stiffness, the role of cross-linking of both chains in determining clot structure is currently unknown. Therefore, the aim of this study was to determine the role of individual α- and γ-chain cross-linking during clot formation, and its effects on clot structure. We made use of a recombinant fibrinogen (γQ398N/Q399N/K406R), which does not allow for γ-chain cross-linking. In the absence of cross-linking, intact D-D interface was shown to play a potential role in fibre appearance time, clot stiffness and elasticity. Cross-linking of the fibrin α-chain played a role in the thickening of the fibrin fibres over time, and decreased lysis rate in the absence of α2-antiplasmin. We also showed that α-chain cross-linking played a role in the timing of fibre appearance, straightening fibres, increasing clot stiffness and reducing clot deformation. Cross-linking of the γ-chain played a role in fibrin fibre appearance time and fibre density. Our results show that α- and γ-chain cross-linking play independent and specific roles in fibrin clot formation and structure

Phenylethynyl Terminated Imide (PETI) Composites Made by High Temperature Vartm

The use of composites as primary structures on aerospace vehicles has increased dramatically over the past decade. As these advanced structures increase in size and complexity, their production costs have grown significantly. A major contributor to these manufacturing costs is the requirement of elevated pressures, during high temperature processing, to create fully consolidated composite parts. Recently, NASA Langley has licensed a series of low viscosity Phenyl Ethynyl Terminated Imide, PETI, oligomers that possess a wide processing window to allow for Resin Transfer Molding, RTM, processing. These resins, PETI-8 and PETI-330, demonstrate void fractions of approx.1% under elevated pressure consolidation. However, when used with a standardized thermal curing cycle in a High Temperature Vacuum Assisted RTM (HT-VARTM) process, they display undesirable void contents in excess of 7%. It was determined previously that under the thermal cycles used for laminate fabrication, the phenylethynyl endcap underwent degradation leading to volatile evolution. Modifications to the processing cycle used in the laminate fabrication have reduced the void content significantly (typically less than 3%) for carbon fiber biaxially woven fabric. For carbon fiber uniaxial fabric, void contents of less than 2% have been obtained using both PETI-8 and PETI-330. The resins were infused into carbon fiber preforms at 260 C and cured between 316 C and 371 C. Photomicrographs of the panels were taken and void contents were determined by acid digestion. Mechanical properties of the panels were determined at both room and elevated temperatures. These include short beam shear and flexure tests. The results of this work are presented herein

High Temperature VARTM of Phenylethynyl Terminated Imides

LaRC phenylethynyl terminated imide (PETI) resins were processed into composites using high temperature vacuum assisted resin transfer molding (VARTM). Although initial runs yielded composites with high void content, process modifications reduced voids to <3%. Photomicrographs were taken and void contents and T(sub g)s of the panels were determined

The Ursinus Weekly, May 17, 1973

Japanese students eager to tour US and study at UC • Preview of freshmen reveals a typical lot • POW speaks to psychology classes • Juniors elect officers for their senior year • Economics majors inducted into honor society • Editorial: Ellsberg and his gift of justice; In praise of PBS • Faculty portrait: Mr. Juan Espadas • Final exam schedule • Taming of the Shrew pleases weekend audience • Trackmen complete successful season • British upset 11-8; Smart coaching helps • Lacrosse team wins two but loses the big onehttps://digitalcommons.ursinus.edu/weekly/1105/thumbnail.jp

Duplication of the EFNB1 Gene in Familial Hypertelorism: Imbalance in Ephrin-B1 Expression and Abnormal Phenotypes in Humans and Mice

Familial hypertelorism, characterized by widely spaced eyes, classically shows autosomal dominant inheritance (Teebi type), but some pedigrees are compatible with X-linkage. No mechanism has been described previously, but clinical similarity has been noted to craniofrontonasal syndrome (CFNS), which is caused by mutations in the X-linked EFNB1 gene. Here we report a family in which females in three generations presented with hypertelorism, but lacked either craniosynostosis or a grooved nasal tip, excluding CFNS. DNA sequencing of EFNB1 was normal, but further analysis revealed a duplication of 937 kb including EFNB1 and two flanking genes: PJA1 and STARD8. We found that the X chromosome bearing the duplication produces ∼1.6-fold more EFNB1 transcript than the normal X chromosome and propose that, in the context of X-inactivation, this difference in expression level of EFNB1 results in abnormal cell sorting leading to hypertelorism. To support this hypothesis, we provide evidence from a mouse model carrying a targeted human EFNB1 cDNA, that abnormal cell sorting occurs in the cranial region. Hence, we propose that X-linked cases resembling Teebi hypertelorism may have a similar mechanism to CFNS, and that cellular mosaicism for different levels of ephrin-B1 (as well as simple presence/absence) leads to craniofacial abnormalities. Hum Mutat 32:1–9, 2011. © 2011 Wiley-Liss, Inc

The Ursinus Weekly, May 10, 1973

USGA meets, discusses possible demerit change • Shakespeare\u27s Shrew tames Thompson-Gay gym tonight • Randy Cole, a sophomore, will study in Scotland next year • Buddhis Follies perform at Valley Forge hospital • IRC, representing India, takes third place in N.Y. • Editorial: The Food at Ursinus • Travelin\u27 6 show is a success due to variety of acts and talent • A memorial to the skipped diploma; A salute to the Good Humor man • Current events series presents wiretap lecture • Musical organizations at U.C. in review; Credit hours given • Tennis enters intercollegiates; Lacrosse places 12 in trials • Sports buffs\u27 corner • Ursinus beats Haverford in baseball, 9-2; Bears 5 & 6 • Letters to the sports editors: Seniors are, for the most part, still alive and well; Who\u27s dying out ?https://digitalcommons.ursinus.edu/weekly/1104/thumbnail.jp

What do child characteristics contribute to outcomes from care: A PRISMA review

This article presents the findings from a systematic review of the literature regarding factors related to positive placement outcomes. Children in care are particularly vulnerable to problems with their emotional and behavioural development. It is important to know which factors affect whether children will have a positive placement outcome or not. Previous research has aimed to examine this, and has found that certain child characteristics can affect placement outcome. Reviews have not reported their search strategy in line with PRISMA guidelines, nor have they always reported the source of the data. This review was particularly interested in which studies had contact with the children or carers themselves, as opposed to a reliance on administrative data. There appear to be child characteristics that affect placement outcome, but findings need to be interpreted with caution due to a high volume of results from administrative data. Future research should aim to conduct full assessments with children when they come into care

The Ursinus Weekly, June 3, 1973

Commentator Rod MacLeish will deliver commencement address • Successes of the USGA reviewed for this year • Dean\u27s Office names top UC graduates • Chapter scholars selected • Editorial: Left, right, or in-between; That wonderful time of the year - for the seniors • Focus: Senior class president, Ed Podolak • Reflections: As the curtain comes down on class of \u2773 • Nietzsche\u27s fried nirvana nuts; The skipped diploma\u27s epitaph: Framed by a sister on training wheels • Letter to the editor: Reply to Shrew review • Spring sports end on encouraging note • Bears complete 9-10 baseball season • Ursinus golf season is year of underclassmen • Volleyball intramuralshttps://digitalcommons.ursinus.edu/weekly/1106/thumbnail.jp