Sunday, 9 April 2017

The Journal of Scleroderma and Related Disorders (JSRD) Volume 1 Number 1 Jan-April 2016.


The Journal of Scleroderma and Related Disorders (JSRD)

Volume 1 Number 1 Jan-April 2016. 


The JSRD is the official journal of The World Scleroderma Foundation, WSF, and The European Scleroderma Trials And Research Group, EUSTAR

The Editorial headline of the first edition, used by the Editors in Chief, Marco Matucci-Cerinic (University of Florence, Italy) and Masataka Kuwana (Nippon Medical School Graduate School of Medicine, Japan), reads:

‘INTRODUCING THE JOURNAL OF SCLERODERMA and RELATED DISORDERS, a challenge for the future of our community’

‘Systemic sclerosis (Ssc) or scleroderma remains the disease associated with the great burden of morbidity and mortality, even though a prominent paradigm shift in treatment strategies has changed clinical practice of many rheumatic diseases.

Despite a series of clinical and basic researches, the pathophysiology of Ssc has not been fully clarified, and effective disease-modifying therapies are still lacking.

However, we strongly believe that the outlook for Ssc and related disorders is now changing rapidly.

During the past decade, a variety of new molecules, pathways, and cell types have been identified as critical players in the diverse manifestations of Ssc.

Much of this research has been made possible by the application of gene expression profiling, genomics, and proteomics with powerful analytic platforms, such as microchip array techniques.

The importance of the epigenetic control in the pathogenic mechanisms reflects the interplay of environment with the genome.

These cutting-edge strategies make it possible to identify and validate novel biomarkers, and to develop precise therapeutic targets…….

These enormous efforts significantly enhance bench-to-bedside research interplay, and basic discoveries are promptly translated into clinical trials at an increasingly rapid pace.

This positive feedback attracts the pharmaceutical industry for developing novel treatment strategies, and, in fact, many clinical trials on potential disease-modifying treatments for Ssc are ongoing globally……’

‘In this era of reform, the Journal of Scleroderma and Related Disorders (JSRD) has been started as an international, multi-disciplinary, peer-reviewed journal, targeting scientists and clinicians interested in Ssc and other related autoimmune and fibrotic diseases.

JSRD is the official journal of the European Scleroderma Trials and Research group (EUSTAR) and the World Scleroderma Foundation, which supports Ssc research in all its aspects and is committed to improving the quality of life for Ssc patients and their families.

The commemorative first issue was published in February 2016 to coincide with the 4th Systemic Sclerosis World Congress.

The 1st Systemic Sclerosis World Congress was successfully held in 2010 in Florence, Italy. Since then, this congress has become the primary platform for exchange of scientific and clinical information through an interaction between practicing or training physicians, scientists, health professionals, patients, and representatives of the pharmaceutical industry throughout the world.

The number of abstracts has increased considerably during recent years, with 455 submitted abstracts for the 4th Systemic Sclerosis World Congress, which reflects the enthusiasm and dedication of the Ssc community.’

The Editorial Board has the following composition:
2 Editors in Chief, 4 Senior Editors, 5 Honorary Editors, 8 Associate Editors, 10 Assistant Editors, 73 Editorial Board members.

The Journal is published three times a year.

The Contents page for Volume 1 Number 1 January – April 2016 (the first edition), looks like this:

Editorials:
Introducing the JSRD, a challenge for the future of our community, Masataka Kuwana, Marco Matucci-Cerinic

“United we win”, communication is the key for a better future in scleroderma, Frank A. Wollheim

Paul Klee: the painter and the contribution of the most famous scleroderma patient to art in the 20th century, Alexander Klee

Progress and priorities in systemic sclerosis: the next 10 years – report from the World Scleroderma Foundation

Review:
Esophageal surgeries in systemic sclerosis (Ssc) – a systematic review of the literature, Yossra Suliman, Sachin Srinivasas, Mary S Maish, Lisa M. Federer, Daniel E. Furst

Congress Report:
Reports from the 2015 American College of Rheumatology congress, Jerome Avouac, Michal Tomcik, Christian Beyer

14 Oral Presentations; 12 posters, abstracts presented at the Congress.

To access Vol.1 Issue 1 Jan - April 2016, Click here

To access the latest Advance Online Publications, Click here
 
The articles included in the Advance Online Publications section have been peer reviewed and accepted by the JSRD and are published online after author approval.

I would urge every patient to sign up for their own copy of JSRD. 

Even if you can not understand all of the contents due to the medical and scientific terminology, the contents provide huge assurance to the global Raynaud’s and Scleroderma community that the world leading experts are collaborating with each other, to improve the entire Raynaud’s and Scleroderma patient experience.

This is very important in relation to seeing an advancement in science, to ensure the scientific statistic analytical parameters are met, large numbers of patients are required, and of course, scleroderma is a rare disease, with only 2.5 million patients worldwide.

I discussed more about Why Global Collaboration is So Important to the Raynaud’s and Scleroderma (Systemic Sclerosis) Patient, here

I discussed the importance of awareness raising for 29th June World Scleroderma Day, here

I discussed the Role of Medical Research to the Raynaud’s Scleroderma Patient, as well as the contents of Volume 1 Number 2, May - August 2016, of The Journal, here

I discussed the importance of Expert Specialist Centres, here

I discussed my experience of taking part in Raynaud’s Scleroderma Clinical Trials, here


Please DONATE to help fund medical research at the Scleroderma Unit, The Royal Free Hospital, London, where 100% of your donation will be used for research only. Thank You.

United, globally, together, we will crack the Raynaud’s Scleroderma (Systemic Sclerosis) code.

#Scleroderma FreeWorld
#RaynaudsFreeWorld  

 
Living the dream Scleroderma Style, hoping for a cure.  



An edited version of this article was published here, in my Column with Scleroderma News, April 2016. 


To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, Click here  
   



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –  
Medical Research provides the brightest light
for the illumination of the rare disease patients’ plight. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO


Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 

1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  



100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018 


  



No comments:

Post a comment