Sunday, 25 February 2018

Current Research Trials, Scleroderma, Raynaud's, Autoimmune Rare Disease. Scleroderma Unit, The Royal Free Hospital, London

Current Research Trials
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 
 

A brief summary outlining the current situation regarding research trials for 
scleroderma patients at the Scleroderma Unit, The Royal Free Hospital, London. 




Drug Investigational trials:

At the Royal Free Hospital we participate in numerous clinical trials to improve the treatment options for patients with scleroderma.

ACT14604 – Efficacy and safety of SAR156597 in the treatment of dcSSc.
This trial is over a 24 week period, with the objective being to evaluate the efficacy of the drug SAR156597 in treating diffuse scleroderma when compared with placebo.

SENSCIS (Nintedanib) – An ongoing trial to investigate the efficacy of the trial drug nintedanib in reducing lung fibrosis and treating skin fibrosis. The trial team recruit patients with systemic sclerosis-associated interstitial lung disease. This is a randomised, placebo-controlled study.

PRedSS – This is a new study to identify the efficacy of Oral prednisolone in early diffuse cutaneous systemic sclerosis compared with placebo. The Royal Free is currently in the set-up phase of the study.

Observational Trials:
As well as drug clinical trials, the Royal Free recruits patients for research studies that gather information to further our understanding of this disease.

STRIKE – Stratification for RisK of progression in scleroderma
This is a research study run by the university of leeds involving patients with Raynaud’s and/or scleroderma. The study follows patients over a period of 5 years, at 6 monthly clinic visits, with questionnaires and blood serum analysis.  The aim is to create a tool that will inform clinicians of ways they can screen for patients at risk of developing scleroderma and ways to prevent or delay the onset of disease-related complications.

SPIN – The Scleroderma Patient-centred Intervention Network (SPIN) Cohort
This study is an ongoing, longitudinal scleroderma patient cohort to better understand problems faced by patients living with scleroderma. Once enrolled, patients complete online questionnaires relating to their health and wellbeing every 3 months. Information from this study is being used to develop further interventions for patients with scleroderma.  
Feb 2018. 

A Big Thank You to Rachel, Stephanie, and the clinical trials team for their ongoing dedication and commitment - sharing the same dream #SclerodermaFreeWorld. 
 
If you are interested in participating in any trial please contact the team on
02073177544 or email: rf.clinicaltrials@nhs.net
   

At last year’s annual Scleroderma Family Day, 2017 programme, Dr Anna Gill gave a presentation about current clinical trials taking place at the Scleroderma Unit. View here

A further update on clinical trial research can be seen in the Scleroderma Unit Christmas 2017 newsletter
 
This year’s Scleroderma Family Day is to be held on Saturday 19th May in the atrium at the Royal Free Hospital. To view the program, Click here

I am very much hoping to attend this year's family day, as I am celebrating my 20th year anniversary of being a patient at the Unit. This Scleroderma Olympian is already in training! 

I am eternally grateful to the superhumans Dame Prof Black, and Prof Denton, whose dedication and commitment to their patients is beyond outstanding. 

They helped me achieve my dream of becoming a barrister, albeit, my symptom management is my current full time job

These superhuman beings continue to be a huge source of inspiration to me. Seeing how happy Prof Denton becomes upon examining my symptom reversal, remains my elixir to keep going. 

For, the day to day reality of living with this diagnosis is no easy feat... Fact... However, best practice care, combined with a good attitude, are crucial in making this health challenge journey, less turbulent.  
 



In my view, clinical research is of huge importance and paramount to the rare disease patient. It provides immense hope to the rare disease patient. In that- improved medicines are being investigated, along with the cause and cure, being understood. 

Thereby, unlocking the rare disease enigma. #SclerodermaFreeWorld. 




February 2018. 



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

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

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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. Read more, here    


  

World Scleroderma Day 2018, Click here  

World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June.  


James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here   

To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


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

  

  
Last Update: Feb 2020.       


Current Research Trials
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  










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