scholarly journals Epidemiological characterization of patients with Pompe disease and their quality of life during the onset of the COVID-19 pandemic

2021 ◽  
Vol 429 ◽  
pp. 118394
Author(s):  
Giancarlos Conde Cardona ◽  
Michelle Polo Martinez ◽  
Carlos Torres Madrid ◽  
Mireya Romero ◽  
Juana Benitez Cardoza
Keyword(s):  
Quality Of Life ◽  
Pompe Disease ◽  
Epidemiological Characterization

scholarly journals Bone Pain in Multiple Myeloma (BPMM)—A Protocol for a Prospective, Longitudinal, Observational Study

Cancers ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 1596
Author(s):  
Marta Diaz-delCastillo ◽  
Rebecca E. Andrews ◽  
Aritri Mandal ◽  
Thomas L. Andersen ◽  
Andrew D. Chantry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Observational Study ◽  
Bone Turnover ◽  
Bone Pain ◽  
Subjective Experience ◽  
Prospective Longitudinal ◽  
Bone Turnover Biomarkers

Multiple myeloma (MM) is a bone marrow neoplasia that causes bone pain in 70% patients. While preclinical models of MM have suggested that both nerve sprouting and nerve injury may be causative for the pain, there is a lack of clinical data. Thus, the primary aims of this clinical study are: (1) to provide a deep characterization of the subjective experience of pain and quality of life in MM patients; (2) to investigate disturbances in the bone innervation of MM patients. Secondary aims include exploring correlations between pain and serum inflammatory and bone turnover biomarkers. In a prospective, observational study (clinicaltrials.gov: NCT04273425), patients with suspected MM requiring a diagnostic iliac crest biopsy at Sheffield Teaching Hospital (UK) are invited to participate. Consenting patients answer seven standardized questionnaires assessing pain, quality of life and catastrophizing. Bone turnover biomarkers and inflammatory cytokines are measured in fasting serum samples, and bone innervation is evaluated in diagnostic biopsies. MM patients are invited to a follow-up upon completion of first line treatment. This will be the first deep characterization of pain in MM patients and its correlation with disturbances in bone innervation. Understanding how bone turnover and inflammation correlate to pain in MM is crucial to identify novel analgesic targets for this condition.

scholarly journals Characterization of Chemosensory Alterations in Advanced Cancer Reveals Specific Chemosensory Phenotypes Impacting Dietary Intake and Quality of Life

2011 ◽  
Vol 41 (4) ◽  
pp. 673-683 ◽  
Author(s):  
Tristin Dawne Brisbois ◽  
Ingrid Heila de Kock ◽  
Sharon Mariko Watanabe ◽  
Vickie Elaine Baracos ◽  
Wendy Victoria Wismer
Keyword(s):  
Quality Of Life ◽  
Dietary Intake ◽  
Advanced Cancer

scholarly journals Effects of Exercise Training on Functional Capacity and Quality of Life in a Patient with Late-Onset Pompe Disease Receiving Enzyme Replacement Therapy

2015 ◽  
Vol 2 (s1) ◽  
pp. S33-S33
Author(s):  
Rosângela M. Silva ◽  
Carmen S.C. Mendes ◽  
Carolina C. Aranda ◽  
Marco A. Curiati ◽  
Maret H. Rand ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Exercise Training ◽  
Enzyme Replacement Therapy ◽  
Replacement Therapy ◽  
Functional Capacity ◽  
Pompe Disease ◽  
Late Onset ◽  
Enzyme Replacement

Episodic Ataxia Type 1: Characterization of the Disease and Its Effect on Quality of Life (S12.005)

Neurology ◽  
2012 ◽  
Vol 78 (Meeting Abstracts 1) ◽  
pp. S12.005-S12.005
Author(s):  
T. Graves ◽  
Y.-H. Cha ◽  
A. Hahn ◽  
R. Barohn ◽  
A. Amato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Episodic Ataxia ◽  
Episodic Ataxia Type

Late-onset Pompe disease primarily affects quality of life in physical health domains

Neurology ◽  
2004 ◽  
Vol 63 (9) ◽  
pp. 1688-1692 ◽  
Author(s):  
M. L.C. Hagemans ◽  
A. C.J.W. Janssens ◽  
L. P.F. Winkel ◽  
K. A. Sieradzan ◽  
A. J.J. Reuser ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Pompe Disease ◽  
Late Onset ◽  
Health Domains

Tu1270 Characterization of Variables Impacting on the Quality of Life of Israeli Patients With Crohn's Disease

2015 ◽  
Vol 148 (4) ◽  
pp. S-843
Author(s):  
Hillel Vardi ◽  
Michael Friger ◽  
Orly Sarid ◽  
Dan Greenberg ◽  
Doron Schwartz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Crohn’S Disease ◽  
Crohn's Disease
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