Current Research Trials
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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
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.
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:
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 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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 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.
#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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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: 
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
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:
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
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.
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
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
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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
