Monday, 8 May 2017

EUSTAR Registration Impacts Favourably On Scleroderma, Raynaud's Clinical Practice – JSRD, Journal of Scleroderma and Related Disorders, Vol.2 Issue 1, Jan - Apr 2017.



 EUSTAR Registration Impacts Favourably

Scleroderma, Raynaud's Clinical Practice.

JSRD, Journal of Scleroderma and Related Disorders,

Vol.2 Issue 1, Jan - Apr 2017. 


Letter to Editor, Journal of Scleroderma and Related Disorders Vol.2 Issue 1, Jan-Apr 2017, pp.1-68, e1-e6


Here a few excerpts from the Letter, highlighting the importance of:

collaborative studies,

patient disease registries,

and, the collection of uniform clinical trial data.


‘The European Scleroderma Trials and Research group (EUSTAR) was formed in 2004 and aims to foster the awareness and research of systemic sclerosis (SSc).

Our Unit became affiliated to EUSTAR in 2015. The affiliation process started with a request to the Portuguese Data Protection Authority (Comissão Nacional de Protecção de Dados – CNPD)….. Informed consent was obtained from all individual participants included in the study.’….

‘EUSTAR registration provided us with a practical framework for patient phenotyping, an update of screening procedures and an internal review of therapy suitability on an individual basis.

The identification of anti-RNA polymerase III antibodies also allowed us to participate in a EUSTAR study (accepted for publication in Journal of Rheumatology). 

We encourage EUSTAR registration as we demonstrate its favourable impact on participation in clinical research, patient screening and treatment.

Cohort descriptions of SSc are recent and very scarce in Portugal. We anticipate it will facilitate further characterization of SSc across healthcare settings.’ 


To read the full letter, Click here 

Due to scleroderma being a rare disease and therefore low patient numbers for purposes of clinical data results, global collaboration for purposes of medical research and best treatment practice is essential.

To read my synopsis of the article ‘emerging strategies and pathways for the treatment of systemic sclerosis’, Click here  

To know more about EUSTAR, Click here  

BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease, Click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, Click here  

May 2017. 



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 


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