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Therapeutic goals in the treatment of Gaucher disease

Gregory M. Pastores, Neal J. Weinreb, Hans Aerts, Generoso Andria, Timothy M. Cox, Manuel Giralt, Gregory A. Grabowski, Pramod K. Mistry, Anna Tylki-Szymańska
2004 Seminars in hematology (Print)  
to be free of neurologic risk. 48 Serial quantification of pain using a recognized "pain assessment tool" is also highly recommended.  ...  Reprinted with permission from Excerpta Medica. 9 Figure 4 4 Bone pain and bone crises among patients in the ICGG Gaucher Registry receiving ERT for 2 years according to previous history of bone pain  ... 
doi:10.1053/j.seminhematol.2004.07.009 pmid:15468045 fatcat:hvks5ajfv5gy7edipmvogeahfa

Care Outcomes for Chiropractic Outpatient Veterans (COCOV): a single-arm, pragmatic, pilot trial of multimodal chiropractic care for U.S. veterans with chronic low back pain

Cynthia R. Long, Stacie A. Salsbury, Robert D. Vining, Anthony J. Lisi, Lance Corber, Elissa Twist, Thad Abrams, Robert B. Wallace, Christine M. Goertz
2022 Pilot and Feasibility Studies  
Retention was tracked through adherence to the treatment plan and completion rates of outcome assessments. Descriptive statistics were calculated for baseline characteristics and outcome variables.  ...  We administered patient-reported outcome assessments through an email link to REDCap, an electronic data capture platform, at baseline and 5 additional timepoints.  ...  Acknowledgements The authors gratefully acknowledge and thank the veterans who made this research possible. We thank Gina M. Bonavito-Larragoite, DC, and Gregory R.  ... 
doi:10.1186/s40814-022-01008-0 pmid:35256010 pmcid:PMC8900358 fatcat:7ivxsdixfjgpxmxki3rgzmfpgu

Fabry disease: Guidelines for the evaluation and management of multi-organ system involvement

Christine M Eng, Dominique P Germain, Maryam Banikazemi, David G Warnock, Christoph Wanner, Robert J Hopkin, Jan Bultas, Philip Lee, Katherine Sims, Scott E Brodie, Gregory M Pastores, Joerg M Strotmann (+1 others)
2006 Genetics in Medicine  
morbidities, as well as therapeutic strategies, including enzyme replacement and other adjunctive therapies, to optimize patient outcomes.  ...  Males with classical Fabry disease develop early symptoms including pain and hypohidrosis by the second decade of life reflecting disease progression in the peripheral and autonomic nervous systems.  ...  History of pain, including frequency and severity, should be assessed using tools such as the Brief Pain Inventory or the McGill Pain Inventory.  ... 
doi:10.1097/01.gim.0000237866.70357.c6 pmid:16980809 fatcat:rc2f7flaq5e4lh2vcu4wfvinkq

TelePain: Primary care chronic pain management through weekly didactic and case‐based telementoring

Diane M. Flynn, Linda H. Eaton, Honor McQuinn, Ashley Alden, Alexa R. Meins, Tessa Rue, David J. Tauben, Ardith Z. Doorenbos
2017 Contemporary Clinical Trials Communications  
We use the Pain Assessment Screening Tool and Outcomes Registry (PASTOR) to measure patient outcomes, including pain, sleep, fatigue, anxiety, and depression.  ...  The study uses a wait-list cluster controlled clinical trial to test: 1) effectiveness of the intervention, and 2) interviews to assess barriers and facilitators of the intervention implementation.  ...  This work was supported by the National Institute of Nursing Research of the National Institutes of Health (award numbers R01NR012450 and K24NR015340), and National Institute on Drug Abuse (award number  ... 
doi:10.1016/j.conctc.2017.10.004 pmid:29497708 pmcid:PMC5826626 fatcat:lbbqzu67ozga3eomubhz76fywe

Enhancing the success of functional restoration using complementary and integrative therapies: Protocol and challenges of a comparative effectiveness study in active duty service members with chronic pain

Diane M. Flynn, Honor McQuinn, Alexandra Fairchok, Linda H. Eaton, Dale J. Langford, Tyler Snow, Ardith Z. Doorenbos
2019 Contemporary Clinical Trials Communications  
Outcome measures include provider-measured functional assessments and patient-reported assessment through the Pain Assessment Screening Tool and Outcomes Registry (PASTOR).  ...  Outcomes are collected at baseline, at the end of stage 1 treatment, post-FR, and at 3- and 6-months post-FR.  ...  Study measures Patient-reported outcomes The Pain Assessment Screening Tool and Outcomes Registry (PASTOR) is the primary tool employed to assess treatment outcomes.  ... 
doi:10.1016/j.conctc.2018.100311 pmid:30582069 pmcid:PMC6297112 fatcat:ivy5jziz45ethbgo7idvdntdbm

Why systematic literature reviews in fabry disease should include all published evidence

Perry M. Elliott, Dominique P. Germain, Max J. Hilz, Marco Spada, Christoph Wanner, Bruno Falissard
2019 European Journal of Medical Genetics  
There are very few randomised, placebo-controlled clinical trials evaluating the outcomes of ERT. Data are often derived from observational, registry-based studies and case reports.  ...  A systematic literature search was conducted in the Embase and PubMed (MEDLINE) databases to retrieve original articles that evaluated outcomes of ERT in patients with Fabry disease; the outcome data were  ...  and other outcomes, such as pain, gastrointestinal outcomes, quality of life and immunogenicity/seroconversion.  ... 
doi:10.1016/j.ejmg.2019.103702 pmid:31195166 fatcat:fv6s42iokzbbxndvrm25wunfi4

ICF-Based Disability Survey in a Rural Population of Adults and Older Adults Living in Cinco Villas, Northeastern Spain: Design, Methods and Population Characteristics

Jesús de Pedro-Cuesta, Magdalena Comín Comín, Javier Virués-Ortega, Javier Almazán Isla, Fuencisla Avellanal, Enrique Alcalde Cabero, Olga Burzaco, Juan Manuel Castellote, Alarcos Cieza, Javier Damián, Maria João Forjaz, Belén Frades (+11 others)
2010 Neuroepidemiology  
Participants screened positive for disability underwent an assessment protocol focusing on primary care diagnoses, disability, lifestyle, and social and health service usage.  ...  Disability Assessment Schedule.  ...  Special thanks go to the Aragón Government Departments of Health and Social Affairs for institutional support and to the Arrabal Health Center for their assistance with administrative and logistic tasks  ... 
doi:10.1159/000311040 pmid:20523075 fatcat:mrpf2yx3hrclfhnzgiixp4lqyq

The underrecognized progressive nature of N370S Gaucher disease and assessment of cancer risk in 403 patients

Tamar H. Taddei, Katherine A. Kacena, Mei Yang, Ruhua Yang, Advitya Malhotra, Michael Boxer, Kirk A. Aleck, Gadi Rennert, Gregory M. Pastores, Pramod K. Mistry
2009 American Journal of Hematology  
We investigated the heterogeneity and natural course of N370S GD in 403 patients. Demographic, clinical, and genetic characteristics of GD at presentation were examined in a crosssectional study.  ...  Adult patients with GD should be monitored for skeletal disease and cancers including multiple myeloma.  ...  Presenting symptoms included symptomatic splenomegaly, bone crises, thrombocytopenia, anemia, and bone pain or fracture; a minority was identified through screening.  ... 
doi:10.1002/ajh.21362 pmid:19260119 pmcid:PMC3008404 fatcat:cfjprwtfbzbjrghwmz7vogbdzi

Effectiveness of a 12-Week Multi-Component Training Program with and without Transcranial Direct-Current Stimulation (tDCS) on Balance to Prevent Falls in Community-Dwelling Older Adults: A Study Protocol

Laura Muñoz-Bermejo, Sabina Barrios-Fernandez, Jorge Carlos-Vivas, María Mendoza-Muñoz, Raquel Pastor-Cisneros, Eugenio Merellano-Navarro, Konstantinos Gianikellis, José Carmelo Adsuar
2022 Biology  
Among the practical implications of this program, it is intended to provide data on its safety and effectiveness to be implemented in different resources as a tool for the prevention of falls.  ...  The falls' consequences include disability, morbidity, and mortality. Although many external and internal factors lead to falls, balance issues play a major role.  ...  This tool has eight elements (physical function, physical role, bodily pain, general health, vitality, social function, emotional role, and mental health), and two short components, physical and mental  ... 
doi:10.3390/biology11020290 pmid:35205156 pmcid:PMC8868777 fatcat:yq6hmsf4rzaxxizcvfarixmsoa

A Critical Review on Obstetric Follow-up of Women Affected by Systemic Lupus Erythematosus

Danilo Pastore, Maria Costa, Mary Parpinelli, Fernanda Surita
2018 Revista Brasileira de Ginecologia e Obstetrícia  
Conclusion Pregnant women with SLE present an increased risk for maternal complications, pregnancy loss and other adverse outcomes.  ...  Studies published in English between 2007 and 2017 were included; experimental studies and case reports were excluded.  ...  index in pregnancy [LAI-P]) have been developed, but mostly remain as research tools.  ... 
doi:10.1055/s-0038-1625951 pmid:29702718 fatcat:wbrxxfc34zccrok47bcxya4c5m

How Evidence-Based Recommendations May Direct Policy Decisions Regarding Appropriate Selection and Use of Dietary Ingredients for Improving Pain

2019 Pain medicine (Malden, Mass.)  
The Defense Veterans Pain Rating Scale, the accepted Department of Defense tool for monitoring changes in pain [2] , coupled with other metrics such as the Pain Assessment Screening Tool and Outcomes  ...  Registry (PASTOR) [3] , would help build the evidence needed to drive clinical practice guidelines and eventually policy.  ... 
doi:10.1093/pm/pnz039 pmid:30986306 pmcid:PMC6544547 fatcat:7gjtrfaowfcibcitaoq2ccq5cm

Implementation of Patient Reported Outcomes ( PROM s) from Specialist Pain Clinics in England and Wales: experience from a nationwide study

C M Price, A CdeC Williams, B H Smith, A Bottle
2019 European Journal of Pain  
This study reports findings from implementation of Patient Reported Outcomes (PROMs) in pain clinics in England and Wales between 2011 and 2013.  ...  Evaluating outcomes in routine clinical practice is a significant challenge for specialist pain clinics due to the complexity of interventions provided and the subjective nature of pain.  ...  In the USA, the development of the PROMIS database for capturing patient outcomes (Cella, Yount et al 2010) was then taken up by The Pain Assessment Screening Tool and Outcomes Registry (PASTOR: Cook,  ... 
doi:10.1002/ejp.1406 pmid:31025797 fatcat:u5f6dmse5vbmdezk2pa67xzyjy

Cognitive recovery after severe traumatic brain injury in children/adolescents and adults: Similar positive outcome but different underlying pathways?

Alessandro Tavano, Susanna Galbiati, Monica Recla, Alessandra Bardoni, Chiara Dominici, Valentina Pastore, Sandra Strazzer
2014 Brain Injury  
role of parental harshness and warmth  ...  (Callous-unemotional behavior and early-childhood onset of behavior problems: the role of parental harshness and warmth Callous-unemotional behavior and early-childhood onset of behavior problems: the  ...  Pain 2014; ePub(ePub): ePub.  ... 
doi:10.3109/02699052.2014.890742 pmid:24655151 fatcat:x2trxroq65ff3mgp7yqcrrcare

Future Directions for Pain Management

Sean Mackey
2016 Hand Clinics  
Two recently released national publications outline a clear path forward for the future of pain assessment, prevention, management and research.  ...  For the goal of precision pain medicine to be successful, we need to link learning health systems with biomarkers (e.g. genomics, proteomics, patient reported outcomes, brain markers) of chronic pain and  ...  The military has also developed a system to address this need called Pain Assessment Screening Tool and Outcomes Registry (PASTOR).  ... 
doi:10.1016/j.hcl.2015.08.012 pmid:26611393 pmcid:PMC4818647 fatcat:vruuacn2wzdthi3termn3vhpvm

Abstracts of the Meeting of the Austrian Stroke Society (ÖGSF) and the Swiss Stroke Society (SHG), June 14–15, 2022, Innsbruck/Austria

Patrik Michel
2022 Clinical and Translational Neuroscience  
We congratulate all the presenters on their research work and contribution.  ...  Twenty (20) abstracts were selected for presentation as oral presentations and sixteen (16) abstracts were selected as poster presentations.  ...  We aimed to investigate trends in frequencies of good functional outcome in rtPA-treated patients and to assess the influence of clinical variables on functional outcome.  ... 
doi:10.3390/ctn6020014 fatcat:7b7yuj343vh5riakdx7ydx3pwi
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