The European Patients' Academy on Therapeutic Innovation (EUPATI) have announced an exciting and unique opportunity offering expert training in medicines research and development, specifically tailored for advocates of people with long term conditons.
The EUPATI Training Course, "Patient Experts in Medicines Research & Development", is a unique, extensive training course covering six modules spanning a range of topics including discovery of medicines, planning of medicines development and clinical trials.
Applications are now open to:
- Employees or volunteers of an organisation representing people who experience chronic and/or long term conditions
- People who live with long term conditions who are not affiliated to an organisation
- Family members and unpaid carers of people who experience chronic and/or long term conditions
For more information and an application form go to the EUPATI website
Arthritis Research UK have been working with Pro Bono Bio, the manufacturer of a new healthcare product for osteoarthritis, and are conducting a questionnaire with them in order to get feedback about people' experiences of managing pain, through healthcare products.
If you are able to spare a couple of minutes to complete a confidential questionnaire, you will help to provide first hand experience which will be invaluable for their research. Online questionnaire here.
Optomen Television, the producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network, and are looking for people with Psoriasis to take part in the programme to discuss their condition and to explain to others what it is like to live with it on a daily basis.
We’ll also be working with a number of specialists throughout this series and, for those who take part in the programme, they can offer a free (off-screen) consultation with one of them. For a no obligation, friendly and confidential chat with one of the team email firstname.lastname@example.org or call 0203 227 5993 leaving your name, age and telephone number.
Disclaimer: PSALV recommends people see their own GP first about any concerns they may have about their condition.
Targeted antipruritic therapies are needed for patients with psoriasis and other dermatologic conditions, according to recent letter to the editor published in theJournal of American Academy of Dermatology.
Previous reports in the literature suggest an estimated 70% of patients with psoriasis have at least moderate pruritus and there are conflicting reports regarding a link between pruritus intensity and psoriasis disease severity. In addition, impact of topical corticosteroids and vitamin D analogs on pruritus in psoriasis has not been effectively studied. You can read more on this story on The Clinical Advisor website
Subclinical atherosclerosis and endothelial dysfunction are more prevalent among patients with psoriasis, according to results of a recent meta-analysis carried out by the Baptist Health Medical Group's Center for Prevention and Wellness Research, in Miami Beach, Florida, prompting researchers to call for cardiovascular disease screening in this population.
It was found that out of the 12 studies reviewed, individuals with psoriasis were consistently found to have a higher carotid intima-media thickness (CIMT) and had a higher burden of coronary artery calcification (CAC), arterial stiffness and endothelial dysfunction. This association persisted after accounting for traditional risk factors, suggesting that psoriasis itself confers increased CVD risk. You can read more on The Clinical Advisor website.
NHS Scotland would like to you to ask for your help to achieve a robust evaluation of the Key Information Summary (KIS). As you may be aware KIS is a new development in NHS Scotland pioneering a shared electronic medical record between healthcare professionals. KIS was introduced to all GP practices in Scotland from early 2013 and is now complete. A KIS created within a GP surgery can be accessed by clinicians outside the practice - in NHS 24, Out of Hours services, Accident and Emergency, the Scottish Ambulance Service and in Secondary Care. KIS can be used to create detailed anticipatory care plans (or “ACPs”) for patients with more complex medical needs.
A questionnaire is available here - the Scottish Government would be very grateful for your feedback and views.
A new study supported by the Milstein Medical Research Program at The Rockefeller University has uncovered the molecular roots of skin discoloration that is often associated with psoriasis, suggesting the possibility of new treatments for pigmentation changes seen not only in psoriasis, but also in other conditions such as eczema and acne. In psoriasis, the culprit is a class of immune system molecules known as cytokines. You can read more about the study here
Voluntary Health Scotland's latest newsletter is available to view here. It features VHS and sector-wide news and events, as well as dates for your diary.
Recent reports on results from the Psoriasis Longitudinal Assessment and Registry (PSOLAR) study show there are no distinct patterns of major adverse cardiovascular events (MACE), and there are limited rates of malignancy, overall.
Results of the PSOLAR study were revealed in a poster presentation at MauiDerm 2014 last week.
“PSOLAR is a multicenter, longitudinal, observational study evaluating long-term safety and clinical outcomes for patients receiving (or eligible to receive) treatment for psoriasis with biologics and/or conventional systemic agents,” according to the reports.
You can read more about the findings of PSOLAR here
People who have long term conditions and their carers have supported calls for a new specialist centre for chronic pain during a Scottish Government consultation on the issue.
In May 2013, the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, announced his intention to ensure that a specialist intensive chronic pain management service is available in Scotland. The majority of respondents backed the creation of a ‘Centre of Excellence’ for chronic pain in a single location in Scotland.
You can read more on the story here
We have been contacted by Optomen, a television production company (producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast) who are producing a brand new TV medical series for Discovery’s TLC Channel and which is looking for participants.
They will be exploring a variety of health conditions in the hope that they can raise awareness of them. They're looking for people with psoriasis to take part in the programme to discuss their condition and to explain to others what it is like to live with it on a daily basis. By doing this, they hoping to raise general awareness of the condition, its symptoms and the types of treatment/care that is currently available.
They will also be working with a number of dermatologists throughout this series and, for those who take part in the programme, they can offer a free (off-screen) consultation with one of them - perhaps as a second opinion or advice on the types of treatments/care that is available to you?
For a no obligation, friendly and confidential chat with one of the team email email@example.com or call 0203 227 5993 leaving your name, age and telephone number. ALL APPLICANTS MUST BE 18 OR OVER.
Patients with the debilitating diseases of rheumatoid arthritis (RA) and psoriatic arthritis (PsA) have seen their delays steadily increase by over 10% in the past 10 years, according to the research commissioned by Merck Sharp & Dohme Limited (MSD). Nearly a third of the 254 patients surveyed who were diagnosed with RA or PsA in the past two years (2011-2013) had waited more than 12 weeks to see a specialist rheumatologist after presenting with symptoms to their GP, compared with one fifth of those diagnosed in 2000-2005.
The research found that for many patients, waiting times fell far outside of the British Society for Rheumatology (BSR)-recognised 12-week ‘window of opportunity’. This is a key timeframe within which to accurately diagnose and begin effective treatment, allowing for dramatic reduction in the risk of further pain and disability and their associated costs. You can read more on the story here
Patients with psoriasis had a greater risk for developing type 2 diabetes mellitus, with disease severity increasing the risk, according to recent study results.
Researchers used data from the Taiwan National Health Insurance Research Database to conduct a cohort study of 6,611 patients with psoriasis which showed that patients with psoriasis are at a moderately higher risk of developing type 2 diabetes compared with the risk in those without a history of psoriasis. You can read more on the story here.
Scientists at Charité – Universitätsmedizin Berlin have discovered why patients with psoriasis are less susceptible to viral infections than patients suffering from atopic dermatitis (atopic eczema). The reason for this is the larger quantity of special proteins present in psoriatic skin, which inhibit viral replication. The interdisciplinary team under the direction of Dr. Robert Sabat from the Department of Dermatology and the Institute of Medical Immunology, in collaboration with the Institute of Virology and the Berlin-Brandenburg Center for Regenerative Therapies (BCRT), has additionally discovered a new function of the immune system. The study is published in the issue of the journal Science Translational Medicine. You can read more on this story here
The British Journal of Dermatology, one of the UKs most respected dermatological journal which aims to advance understanding, management and treatment of skin disease and improve patient outcomes, has launched a series of Plain Language Summaries of selected studies- intended for people with skin conditions, or other interested individuals, who are not medically or scientifically qualified.
Each summary will be a maximum of 250 words, highlighting the key points of the research, in easy to understand language. The summaries will provide a ‘taster’ of the article that presents the objectives and key findings of the study, allowing people to decide if the full article will be of interest to them.
To view the latest summaries, including one on psoriasis, click here
Elderly patients with psoriasis were 70% more likely to have nonalcoholic fatty liver disease (NAFLD) than patients without psoriasis when adjusted for confounding risk factors, according to recent study results.
Researchers in the Netherlands studied 2,292 patients and found that patients with psoriasis had a 46.2% prevalence of NAFLD compared with 33.3% of the remaining 2,174 patients. “Psoriasis seems to be independently associated with NAFLD,” the researchers concluded. “The increased prevalence of NAFLD in participants with psoriasis should alert physicians to consider possible chronic hepatic involvement before administering therapies with potentially liver toxicity.”
You can read more here
People with a type of arthritis affecting the skin and joints respond significantly better to early, aggressive drug treatment compared to standard care, according to preliminary results presented by a University of Leeds lecturer to a major US conference.
Although better drugs are now available to treat the condition than in the past, Dr Helliwell and his team believe that earlier, intensive treatment of the condition can reduce joint damage more effectively, preventing disability. You can read more on the story on the Leeds University website
Easy Fundraising will donate 1.2% of any spend in the Argos sale to PSALV - and it won't cost you a penny. If you're planning to buy anything in the January sales, perhaps you might consider signing up to Easy Fundraising who will donate a percentage of any sales to PSALV at no extra cost to you. Thank you!
An international team of researchers has found more than 40 new areas in DNA that increase the risk of rheumatoid arthritis. The work is the largest genetic study ever carried out, involving nearly 30,000 patients.
The investigators believe new drugs could be developed to target these areas that could one day provide a cure for the disease. The findings are published in the Journal Nature, and you can read more on the story on the BBC website
PSALV is delighted to report that we have received a diploma as a member of IFPA, the International Federation of Psoriasis Associations in recognition of its participation in IFPA's international film project 'Under the Spotlight'. PSALV's Director Janice Johnson was featured talking about her experience of psoriasis and psoriatic arthritis - you can watch the film here
People on painkillers for chronic pain should have at least an annual review of their medication to ensure they are being given the best drugs to treat their condition, according to new advice to be issued to GPs and healthcare professionals. A range of recommendations – issued by the Scottish Intercollegiate Guidelines Network (SIGN), which is part of Healthcare Improvement Scotland – also calls for patients to be encouraged to take regular exercise and to undergo pain management programmes to help manage their conditions. You can read more on this story here
Scientists at Charité – Universitätsmedizin Berlin have discovered why patients with psoriasis are less susceptible to viral infections than patients suffering from atopic dermatitis (atopic eczema). The reason for this is the larger quantity of special proteins present in psoriatic skin, which inhibit viral replication. The authors of the just-published study show that compared to the skin of patients with psoriasis, the skin of atopic dermatitis patients produces smaller quantities of what are known as antiviral proteins, which inhibit viral replication. You can read more on the story here
SIGN guideline 136 "Management of Chronic Pain" now available to view online. This guideline provides recommendations and treatment pathways based on current evidence for best practice in the assessment and management of adults with chronic non-malignant pain in nonspecialist settings, including self management, pharmacological,psychological, physical, complementary and dietary therapies.
You can view the guideline and the accompanying patient pathway on the SIGN website
Novartis Pharmaceuticals UK Limited has announced the launch of the UK’s largest clinical trial to investigate a potential new biologic treatment for adults with moderate-severe psoriasis. Dr Richard Warren, Senior Lecturer, University of Manchester and Honorary Consultant Dermatologist at Salford Royal NHS Foundation Trust is the Lead Investigator for the clinical trial.
The trial is designed to provide more information about this potential new treatment for moderate-severe psoriasis and will involve approximately 50 dermatology centres across the UK - with 3 in Scotland. Adults in the UK with psoriasis who have received treatment from a dermatologist can find out more about the clinical trial at www.psoriasisclinicaltrials.co.uk.
The following slideshow features photos of psoriasis, nail psoriasis, psoriatic arthritis, psoriasis triggers such as the weather, tattoos and alcohol, treatments, and available support.