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Article ; Online: Rurality modifies the association between symptoms and the diagnosis of amyotrophic lateral sclerosis.

Hart, Alexander A / Swenson, Andrea / Narayanan, Nandakumar S / Simmering, Jacob E

Amyotrophic lateral sclerosis & frontotemporal degeneration

2024 , Page(s) 1–11

Abstract: Objective: We utilized national claims-based data to identify the change in odds of diagnosis of ALS following possible-ALS-symptoms-and whether the change varies in urban/rural areas.: Methods: Insurance claims were obtained from the Merative ... ...

Abstract	Objective: We utilized national claims-based data to identify the change in odds of diagnosis of ALS following possible-ALS-symptoms-and whether the change varies in urban/rural areas. Methods: Insurance claims were obtained from the Merative MarketScan databases, 2001-2021 in the United States. Individuals with incident ALS were identified and matched on age, sex, and enrollment period to individuals without ALS. For all individuals, claims for 8 possible-ALS-symptoms in the time before any ALS diagnosis were identified. We then used conditional logistic regression to estimate the odds of being diagnosed with ALS following these symptoms and whether the association varied by urban/rural location. Results: 19,226 individuals with ALS were matched to 96,126 controls. Patients with ALS were more likely to live in an urban area (87.0% vs 84.5%). Of those with ALS 84% had 1+ of our 8 possible-ALS-symptom compared to 51% of controls. After adjustment for confounders, having possible-ALS-symptoms increased the odds of a future ALS diagnosis by nearly 5-fold. A dose-response pattern was present with increasing odds as the number of symptoms increased. In all models, urban areas were associated with increased odds of diagnosis with ALS while the effect of having a symptom was smaller in urban places. Urban cases of ALS are diagnosed at younger ages. Conclusions: These results suggest symptoms may appear and be noted years before the diagnosis of ALS. Additionally, rural patients are diagnosed at later ages with a greater dependence on symptoms than urban patients. These results highlight potential improvements for screening for ALS.
Language	English
Publishing date	2024-02-14
Publishing country	England
Document type	Journal Article
ZDB-ID	2705049-X
ISSN	2167-9223 ; 2167-8421
ISSN (online)	2167-9223
ISSN	2167-8421
DOI	10.1080/21678421.2024.2315185
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Article ; Online: Safety guidelines for youth agricultural work in the United States: A description of the development and updating process.

Swenson, Andrea V R / Salzwedel, Marsha / Peltier, Cassandra / Lee, Barbara C

Frontiers in public health

2023 Volume 11, Page(s) 1048718

Abstract: To reduce the prevalence of youth injuries and fatalities in agricultural settings, safety professionals considered developing a guideline-focused intervention for how and when youth should conduct farm chores. In 1996, the process to create guidelines ... ...

Abstract	To reduce the prevalence of youth injuries and fatalities in agricultural settings, safety professionals considered developing a guideline-focused intervention for how and when youth should conduct farm chores. In 1996, the process to create guidelines started, which then expanded to include professionals from the United States, Canada, and Mexico. This team used a consensus driven approach to develop the guidelines and launch the North American Guidelines for Children's Agricultural Tasks. By 2015, research related to the published guidelines indicated a need to incorporate new empirical evidence and develop dissemination plans based on new technologies. The process for updating the guidelines was supported by a 16-person steering committee and used content experts and technical advisors. The process yielded updated and new guidelines, now called Agricultural Youth Work Guidelines. This report responds to request for further details on the development and update of the guidelines and describes the genesis of the guidelines as an intervention, the process for creating guidelines, recognition of the need to update guidelines based on research, and the process for updating guidelines to assist in others engaged in similar types of interventions.
MeSH term(s)	Child ; United States ; Humans ; Adolescent ; Agriculture ; Canada ; Mexico ; Activities of Daily Living ; Consensus
Language	English
Publishing date	2023-04-18
Publishing country	Switzerland
Document type	Journal Article ; Research Support, U.S. Gov't, P.H.S.
ZDB-ID	2711781-9
ISSN	2296-2565 ; 2296-2565
ISSN (online)	2296-2565
ISSN	2296-2565
DOI	10.3389/fpubh.2023.1048718
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Article ; Conference proceedings: JA:2021-38. Assessing Facebook Advertising as a Recruitment Strategy for In-Person Workshops

Swenson, Andrea / Ploeckelman, Melissa / Salzwedel, Marsha / Weichelt, Bryan

Journal of agromedicine. 2020 July 02, v. 25, no. 3

2020

Abstract: Purpose: We conducted an evaluation of paid Facebook strategy for in-person workshop recruitment. In the summer of 2019, Child Agricultural Injury Prevention workshops were scheduled in Lexington, KY and Hershey, PA. Each workshop was a 2-day event with ... ...

Abstract	Purpose: We conducted an evaluation of paid Facebook strategy for in-person workshop recruitment. In the summer of 2019, Child Agricultural Injury Prevention workshops were scheduled in Lexington, KY and Hershey, PA. Each workshop was a 2-day event with a registration cost of $249 ($199 early bird). In addition to traditional recruitment methods (conference announcements, brochures, friends, colleagues, listservs, press releases), a targeted Facebook campaign was employed. The targeted campaign included twelve posts, three paid for (boosted), and nine standard (not boosted), plus an additional paid advertisement for each of the two workshops. Facebook posts covered three content messages types (a location attraction, an educational message, and a fear-based message). Each content message type was used one time per week for 4 weeks and had one paid posting, with $100 budgeted per post ($300 total) during the campaign. The targeted audience for the paid posts varied by workshop location. Additionally, a $200 advertisement for each workshop ran on Facebook for 4 weeks prior to each workshop. Methods: To assess the effectiveness of the Facebook strategy for in-person workshop recruitment, 48 participants were asked how they heard about the workshop on the workshop evaluation form. At the Lexington, KY workshop, 44.44% of participants completed the evaluation form, and 76.19% of participants at the Hershey, PA workshop completed the evaluation form. Findings: Hearing about the workshop through Facebook was noted on two individuals’ workshop evaluation forms (one from each workshop). Both individuals selected Facebook in combination with other sources (friend/colleague, listserv, brochure/flyer, traditional media/press release). With the data available, the cost of promotion per end workshop participant exceeded $500/participant recruited through Facebook. The Lexington, KY Facebook campaign reached 33,279 people, and the Hershey, PA campaign reached 9,658 people. Additional workshop recruitment details and Facebook analytics related to the strategy is available. Practical Application: Our findings are applicable to other organizations recruiting for in-person training programs, as well as those interested in targeted social media campaigns.
Keywords	agromedicine ; children ; electronic discussion groups ; people ; summer
Language	English
Dates of publication	2020-0702
Size	p. 261-262.
Publishing place	Taylor & Francis
Document type	Article ; Conference proceedings
Note	NAL-AP-2-clean
ZDB-ID	1289325-0
ISSN	1545-0813 ; 1059-924X
ISSN (online)	1545-0813
ISSN	1059-924X
DOI	10.1080/1059924X.2020.1765614
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Article ; Online: Editorial: Safeguarding youth from agricultural injury and illness: international experiences.

Lee, Barbara C / Becot, Florence A / Bendixsen, Casper / Benny, Christopher / Lundqvist, Peter / Swenson, Andrea / Weichelt, Bryan / Franklin, Richard C

Frontiers in public health

2023 Volume 11, Page(s) 1270578

MeSH term(s)	Adolescent ; Humans ; Agriculture ; Occupational Injuries/prevention & control
Language	English
Publishing date	2023-08-18
Publishing country	Switzerland
Document type	Editorial ; Research Support, U.S. Gov't, P.H.S.
ZDB-ID	2711781-9
ISSN	2296-2565 ; 2296-2565
ISSN (online)	2296-2565
ISSN	2296-2565
DOI	10.3389/fpubh.2023.1270578
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Article ; Online: Highlights of the Virtual 2021 North American Agricultural Safety Summit.

Lee, Barbara C / Hair, Dan M / McCluer, Jess / Murphy, Dennis J / Swenson, Andrea V R

Journal of agromedicine

2021 Volume 26, Issue 3, Page(s) 289–293

MeSH term(s)	Agriculture ; Humans ; North America ; Occupational Health
Language	English
Publishing date	2021-06-01
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, P.H.S.
ZDB-ID	1289325-0
ISSN	1545-0813 ; 1059-924X
ISSN (online)	1545-0813
ISSN	1059-924X
DOI	10.1080/1059924X.2021.1931607
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Article: JA:2021-8. Evaluating the SAY National Clearinghouse

Fetzer, Linda / Raygor, Andrea / Swenson, Andrea / Yoder, Aaron / Gorucu, Serap

Journal of agromedicine. 2020 July 02, v. 25, no. 3

2020

Abstract: Purpose: The purpose of this study was to conduct a formative evaluation to improve the functionality and usability of the Safety in Agriculture for Youth (SAY) Project National Clearinghouse. The SAY Project is a USDA-NIFA grant, and the evaluation is ... ...

Abstract	Purpose: The purpose of this study was to conduct a formative evaluation to improve the functionality and usability of the Safety in Agriculture for Youth (SAY) Project National Clearinghouse. The SAY Project is a USDA-NIFA grant, and the evaluation is being conducted through a grant through the National Children’s Center. Methods: A quarterly SAY Clearinghouse eNews is sent to FFA and 4-H educators in Pennsylvania and Utah as well as people who have signed up for the eNews at the National FFA Convention. Four online surveys were conducted between April 2017 and December 2019 to examine the usability, structure, and available content of the Clearinghouse. This information will be a formative evaluation to make improvements to the Clearinghouse. Results/Findings: The survey results reflect responses from those affiliated with FFA and provides pertinent information about the type and topics of educational resources that they utilize in their program. This type of information is useful when looking at material to include in the SAY Clearinghouse and the promotion. The alignment of the SAY Clearinghouse contents to the AFNR standards was seen positively by the majority of the respondents. Marketing continues to be a challenge for the SAY Clearinghouse because only a small percentage was already familiar with the Clearinghouse. Those individuals familiar with the Clearinghouse learned about it through professional meetings and promotional material. Respondents indicated their likelihood of using SAY materials and positively rated the organization, usability, and range of topics covered by the Clearinghouse. Practical Application: Our overall goal is to reduce the number of injuries and fatalities associated with agricultural operations. SAY National Clearinghouse provides access to agricultural safety and health curriculums and improved safety and health of youth working in agriculture.
Keywords	National Institute of Food and Agriculture ; agricultural health and safety ; agromedicine ; surveys ; youth ; Pennsylvania ; Utah
Language	English
Dates of publication	2020-0702
Size	p. 236-237.
Publishing place	Taylor & Francis
Document type	Article
Note	NAL-AP-2-clean
ZDB-ID	1289325-0
ISSN	1545-0813 ; 1059-924X
ISSN (online)	1545-0813
ISSN	1059-924X
DOI	10.1080/1059924X.2020.1763734
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Article ; Online: Apilimod dimesylate in C9orf72 amyotrophic lateral sclerosis: a randomized phase 2a clinical trial.

Babu, Suma / Nicholson, Katharine A / Rothstein, Jeffrey D / Swenson, Andrea / Sampognaro, Paul J / Pant, Pravin / Macklin, Eric A / Spruill, Susan / Paganoni, Sabrina / Gendron, Tania F / Prudencio, Mercedes / Petrucelli, Leonard / Nix, Darrell / Landrette, Sean / Nkrumah, Esther / Fandrick, Keith / Edwards, Joan / Young, Peter R

Brain : a journal of neurology

2024

Abstract: Apilimod dimesylate is a first-in-class phosphoinositide kinase, FYVE-type zinc finger containing (PIKfyve) inhibitor with favourable clinical safety profile and has demonstrated activity in preclinical C9orf72 and TDP-43 amyotrophic lateral sclerosis ... ...

Abstract	Apilimod dimesylate is a first-in-class phosphoinositide kinase, FYVE-type zinc finger containing (PIKfyve) inhibitor with favourable clinical safety profile and has demonstrated activity in preclinical C9orf72 and TDP-43 amyotrophic lateral sclerosis models. In this amyotrophic lateral sclerosis clinical trial, the safety, tolerability, CNS penetrance, and modulation of pharmacodynamic target engagement biomarkers were evaluated. This Phase 2a, randomized, double-blind, placebo-controlled, biomarker-endpoint clinical trial was conducted in four USA centres (ClinicalTrials.gov NCT05163886). Participants with C9orf72 repeat expansion were randomly assigned (2:1) to receive twice-daily oral treatment of 125 mg apilimod dimesylate capsules or matching placebo for 12 weeks, followed by a 12-week open-label extension. Safety was measured as the occurrence of treatment-emergent adverse or serious adverse events attributable to study drug, and tolerability as trial completion on treatment over 12 weeks. Changes from baseline in plasma and CSF and concentrations of apilimod and its active metabolites and of pharmacodynamic biomarkers of PIKfyve inhibition (soluble glycoprotein nonmetastatic melanoma protein B [sGPNMB] upregulation) and disease-specific CNS target engagement (poly[GP]). Between Dec 16, 2021, and Jul 7, 2022, 15 eligible participants were enrolled. There were no drug-related serious adverse events reported in the trial. Fourteen (93%) participants completed the double-blind period with 99% dose compliance (N=9 [90%] apilimod dimesylate; N=5 [100%] placebo). At Week 12, apilimod dimesylate was measurable in CSF at 1.63 ng/mL (SD: 0.937). At Week 12, apilimod dimesylate increased plasma sGPNMB by > 2.5-fold (p < 0.001) indicating PIKfyve inhibition and lowered CSF poly(GP) protein levels by 73% (p < 0.001) indicating CNS tissue-level proof of mechanism. Apilimod dimesylate met prespecified key safety and biomarker endpoints in this Phase 2a trial and demonstrated CNS penetrance and pharmacodynamic target engagement. Apilimod dimesylate was observed to have the greatest reduction in CSF poly(GP) levels observed to date in C9orf72 clinical trials.
Language	English
Publishing date	2024-04-12
Publishing country	England
Document type	Journal Article
ZDB-ID	80072-7
ISSN	1460-2156 ; 0006-8950
ISSN (online)	1460-2156
ISSN	0006-8950
DOI	10.1093/brain/awae109
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Article: Children's Experiences of Time when a Parent Travels for Work.

Zvonkovic, Anisa / Swenson, Andrea / Cornwell, Zoë

Journal of marriage and the family

2017 Volume 79, Issue 4, Page(s) 983–1000

Abstract: This qualitative study focuses on different ways time is experienced by children in families who face time challenges due to a family member's job that required work travel. Data are from a family-level study that includes interviews of all family ... ...

Abstract	This qualitative study focuses on different ways time is experienced by children in families who face time challenges due to a family member's job that required work travel. Data are from a family-level study that includes interviews of all family members over the age of 7. Using grounded theory methodology, this study illustrates ways in which job demands and family processes interact. Analysis centers on the 75 children's perspectives from 43 families. Holding together assessments of having enough time while wanting more time with their parents, children express emotion, generally unrecognized by parents, around the topic of family time. Children's experience of time with parents is rushed or calm, depending on the activities done in time and the gender of the parent with whom they spend time. Findings are interpreted through a feminist social constructionist lens.
Language	English
Publishing date	2017-08
Publishing country	United States
Document type	Journal Article
ZDB-ID	2066605-6
ISSN	1741-3737 ; 0022-2445
ISSN (online)	1741-3737
ISSN	0022-2445
DOI	10.1111/jomf.12386
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Article ; Online: Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy.

Korb, Manisha / Peck, Allison / Alfano, Lindsay N / Berger, Kenneth I / James, Meredith K / Ghoshal, Nupur / Healzer, Elise / Henchcliffe, Claire / Khan, Shaida / Mammen, Pradeep P A / Patel, Sujata / Pfeffer, Gerald / Ralston, Stuart H / Roy, Bhaskar / Seeley, William W / Swenson, Andrea / Mozaffar, Tahseen / Weihl, Conrad / Kimonis, Virginia

Orphanet journal of rare diseases

2022 Volume 17, Issue 1, Page(s) 23

Abstract: Valosin-containing protein (VCP) associated multisystem proteinopathy (MSP) is a rare inherited disorder that may result in multisystem involvement of varying phenotypes including inclusion body myopathy, Paget's disease of bone (PDB), frontotemporal ... ...

Abstract	Valosin-containing protein (VCP) associated multisystem proteinopathy (MSP) is a rare inherited disorder that may result in multisystem involvement of varying phenotypes including inclusion body myopathy, Paget's disease of bone (PDB), frontotemporal dementia (FTD), parkinsonism, and amyotrophic lateral sclerosis (ALS), among others. An international multidisciplinary consortium of 40+ experts in neuromuscular disease, dementia, movement disorders, psychology, cardiology, pulmonology, physical therapy, occupational therapy, speech and language pathology, nutrition, genetics, integrative medicine, and endocrinology were convened by the patient advocacy organization, Cure VCP Disease, in December 2020 to develop a standard of care for this heterogeneous and under-diagnosed disease. To achieve this goal, working groups collaborated to generate expert consensus recommendations in 10 key areas: genetic diagnosis, myopathy, FTD, PDB, ALS, Charcot Marie Tooth disease (CMT), parkinsonism, cardiomyopathy, pulmonology, supportive therapies, nutrition and supplements, and mental health. In April 2021, facilitated discussion of each working group's conclusions with consensus building techniques enabled final agreement on the proposed standard of care for VCP patients. Timely referral to a specialty neuromuscular center is recommended to aid in efficient diagnosis of VCP MSP via single-gene testing in the case of a known familial VCP variant, or multi-gene panel sequencing in undifferentiated cases. Additionally, regular and ongoing multidisciplinary team follow up is essential for proactive screening and management of secondary complications. The goal of our consortium is to raise awareness of VCP MSP, expedite the time to accurate diagnosis, define gaps and inequities in patient care, initiate appropriate pharmacotherapies and supportive therapies for optimal management, and elevate the recommended best practices guidelines for multidisciplinary care internationally.
MeSH term(s)	Amyotrophic Lateral Sclerosis/genetics ; Cell Cycle Proteins/genetics ; Humans ; Mutation ; Myositis, Inclusion Body ; Osteitis Deformans/genetics ; Standard of Care ; Valosin Containing Protein/genetics
Chemical Substances	Cell Cycle Proteins ; Valosin Containing Protein (EC 3.6.4.6)
Language	English
Publishing date	2022-01-29
Publishing country	England
Document type	Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	2225857-7
ISSN	1750-1172 ; 1750-1172
ISSN (online)	1750-1172
ISSN	1750-1172
DOI	10.1186/s13023-022-02172-5
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Article: Implications of parents' work travel on youth adjustment.

Wheeler, Lorey A / Zvonkovic, Anisa M / Swenson, Andrea R / Faas, Caitlin / Borowski, Shelby / Nutting, Ruth

Community, work & family

2017 Volume 21, Issue 3, Page(s) 326–343

Abstract: Guided by ecological, work-family spillover and crossover frameworks, this study examined mechanisms linking parental work travel (i.e., nights per year) to youth adjustment (i.e., externalizing and internalizing behaviours) through youth's perceptions ... ...

Abstract	Guided by ecological, work-family spillover and crossover frameworks, this study examined mechanisms linking parental work travel (i.e., nights per year) to youth adjustment (i.e., externalizing and internalizing behaviours) through youth's perceptions of parenting (i.e., knowledge, solicitation) with traveller and youth gender as moderators in a sample of 78 children in 44 two-parent families residing in the United States. The findings from multilevel analyses suggested that mothers' travel nights predicted lower levels of maternal knowledge, with variation by traveller and youth gender. Mothers' and fathers' work travel and perceived parenting were predictors of youth's externalizing behaviours, whereas only fathers' work travel and perceived parenting were predictors of youth's internalizing behaviours. Tests of indirect effects indicated that maternal work travel linked to youth's externalizing behaviours through youth's perceptions of maternal knowledge. These findings add to our limited understanding of work-family issues for parents who have the unique work demand of frequently travelling.
Language	English
Publishing date	2017-05-19
Publishing country	England
Document type	Journal Article
ZDB-ID	2023569-0
ISSN	1469-3615 ; 1366-8803
ISSN (online)	1469-3615
ISSN	1366-8803
DOI	10.1080/13668803.2017.1327842
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