Advocacy in Neurology

The concept of advocacy literally means to speak for someone. Rooted in law, the term has been increasingly used in medical and patient-related contexts in the past years. This book focuses on advocacy activities in the field of neurology. Neurology deals with heterogeneous and diverse populations of patients, who suffer from disability, chronic, and often progressive diseases. The complex characteristics of neurological diseases yield exceptional challenges to plan for and implement advocacy activities on all levels. All stakeholders are challenged to provide the support patients need; advocacy facilitates this process and bundles efforts to reach the objective of the advocacy task. Building on the premise that advocacy goes beyond merely theoretical claims, this book collects and organizes advocacy approaches in practice. Thereby, we draw on different dimensions of ‘advocacy in neurological practice’ and discuss implications for management, healthcare, planning, and policymaking. We place special emphasis on what advocacy means for several different diseases, such as amyotrophic lateral sclerosis (ALS), brain tumours, MS, epilepsy among others. Contributions include best practices, lessons learnt, and tools to be used. The main goal of this book is to raise awareness for advocacy in neurology and empower readers to plan for and implement appropriate activities. In advocacy, anyone can be both an advocate and an advocatee. This book offers a seminal contribution for anyone who is pursuing or intending to pursue advocacy in neurology and related fields.

Diagnostics ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. 1210
Author(s):  
Júlia Costa ◽  
Marta Gromicho ◽  
Ana Pronto-Laborinho ◽  
Conceição Almeida ◽  
Ricardo A. Gomes ◽  
...  

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative neuromuscular disease that affects motor neurons controlling voluntary muscles. Survival is usually 2–5 years after onset, and death occurs due to respiratory failure. The identification of biomarkers would be very useful to help in disease diagnosis and for patient stratification based on, e.g., progression rate, with implications in therapeutic trials. Neurofilaments constitute already-promising markers for ALS and, recently, chitinases have emerged as novel marker targets for the disease. Here, we investigated cerebrospinal fluid (CSF) chitinases as potential markers for ALS. Chitotriosidase (CHIT1), chitinase-3-like protein 1 (CHI3L1), chitinase-3-like protein 2 (CHI3L2) and the benchmark marker phosphoneurofilament heavy chain (pNFH) were quantified by an enzyme-linked immunosorbent assay (ELISA) from the CSF of 34 ALS patients and 24 control patients with other neurological diseases. CSF was also analyzed by UHPLC-mass spectrometry. All three chitinases, as well as pNFH, were found to correlate with disease progression rate. Furthermore, CHIT1 was elevated in ALS patients with high diagnostic performance, as was pNFH. On the other hand, CHIT1 correlated with forced vital capacity (FVC). The three chitinases correlated with pNFH, indicating a relation between degeneration and neuroinflammation. In conclusion, our results supported the value of CHIT1 as a diagnostic and progression rate biomarker, and its potential as respiratory function marker. The results opened novel perspectives to explore chitinases as biomarkers and their functional relevance in ALS.


Author(s):  
Meric Ozturk ◽  
Marit Nilsen-Hamilton ◽  
Muslum Ilgu

Being the predominant cause of disability, neurological diseases have received much attention from the global health community. Over a billion people suffer from one of the following neurological disorders: dementia, epilepsy, stroke, migraine, meningitis, Alzheimer's disease, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, Huntington’s disease, prion dis-ease, or brain tumors. Diagnosis and treatment options are limited for many of these diseases. Aptamers, being small and non-immunogenic nucleic acid molecules that are easy to chemically modify, offer potential diagnostic and theranostic applications to meet these needs. This review covers pioneer studies to apply aptamers, which show promise for future diagnostics and treatments of neurological disorders that pose increasingly dire worldwide health challenges.


2021 ◽  
Vol 14 (12) ◽  
pp. 1260
Author(s):  
Meric Ozturk ◽  
Marit Nilsen-Hamilton ◽  
Muslum Ilgu

Being the predominant cause of disability, neurological diseases have received much attention from the global health community. Over a billion people suffer from one of the following neurological disorders: dementia, epilepsy, stroke, migraine, meningitis, Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, Huntington’s disease, prion disease, or brain tumors. The diagnosis and treatment options are limited for many of these diseases. Aptamers, being small and non-immunogenic nucleic acid molecules that are easy to chemically modify, offer potential diagnostic and theragnostic applications to meet these needs. This review covers pioneering studies in applying aptamers, which shows promise for future diagnostics and treatments of neurological disorders that pose increasingly dire worldwide health challenges.


Author(s):  
Katharine A. Nicholson ◽  
James D. Berry

The current state of amyotrophic lateral sclerosis (ALS) trial design is best understood within the context of ALS research over the past quarter century. Before the early 1990s, trials in ALS were typically small and clinical trial methodology was less rigorous than it is today. With the discovery of the SOD1 gene mutation in the early 1990s, a new era of excitement and innovation for ALS research began. Since then, the number of ALS trials has steadily increased and trial design and methodology has become increasingly sophisticated.


2005 ◽  
Vol 2 (3-4) ◽  
pp. 185-194 ◽  
Author(s):  
Anissa Fergani ◽  
Luc Dupuis ◽  
Natasa Jokic ◽  
Yves Larmet ◽  
Marc de Tapia ◽  
...  

2013 ◽  
Vol 71 (10) ◽  
pp. 815-817 ◽  
Author(s):  
Marleide da Mota Gomes ◽  
Eliasz Engelhardt

Jean-Martin Charcot was a pioneer in a variety of subjects, including nervous system diseases; anatomy; physiology; pathology; and diseases of ageing, joints, and lungs. His medical achievements were mainly based on his anatomopathological proficiency, his observation, and his personal thoroughness that favored the delineation of the nosology of the main neurological diseases, including multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s disease, peroneal muscular atrophy, and hysteria/epilepsy. The link of this anatomoclinical method with iconographic representations and theatrical lessons, and the rich bibliographical documentations, carried out in a crowded diseased people barn - Salpetrière hospital were the basis of his achievements, which are still discussed 120 years after his death.


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