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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: Raynauds Scleroderma Awareness Global Patients
#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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