Do you have a skin condition that you want to change?


Katie at TwoFour has got in touch with us about a new BBC Three series focusing on skin conditions. The show offers people the chance to see experts, possible treatment and to have a chat about their skin conditions.
If this is up your street and sounds like something you or a family member or friend may be interested in applying for please follow / pass on this link: https://b1.etribez.com/ag/twofour2/skin/welcome.html

Patient needs and access to care

A European study is looking at patients’ with skin diseases access to care and their needs. Hyperhidrosis is classes as a skin condition and we know access to care in the NHS in the UK varies according to where you live. Please read the message below and complete the short survey via the link below.

Dear patients,

The Fondation René Touraine – FRT, is a European non-governmental, non-profit organization whose purpose is to support therapeutic
progress in dermatology through actions bringing together
dermatologists, scientists, pharmaceutical companies and health
authorities. The FRT is financially supported by the EADV – European
Academy of Dermatology and Venereology to conduct a qualitative study
about patients’ needs.

Therefore, we would need your opinion about the quality of care you received,
the access you have to verified information and also general information on a casual day with your
skin disease and on the unmet needs your encounter. The goal of this study
is to approach patients’ reality in todays’ healthcare system.
We have set up a secured link where you can answer our questions
anonymously. The data is collected and analyzed by the Fondation René
Touraine.

https://www.surveymonkey.com/r/PGWXQLC

Thank you for your help!
The Fondation René Touraine’s Team

Research Priorities Set

The Hyperhidrosis Priority Setting Partnership has surveyed more than 250 patients and clinicians, including nurses, GPs and dermatologists, to identify research priorities for the future. The results are now published and the top ten priorities are:

  1. Are there any safe and effective permanent solutions for hyperhidrosis?
  2. What is the most effective and safe oral treatment (drugs taken by mouth) for hyperhidrosis?
  3. What are the most effective and safe ways to reduce sweating in particular areas of the body (e.g. hands, feet, underarms, face, head etc.)?
  4. How does hyperhidrosis affect quality of life?
  5. Are combinations of different treatments more effective than one type of treatment for hyperhidrosis?
  6. What is the most safe and effective treatment for mild to moderate hyperhidrosis?
  7. Could targeted therapies or biologics (e.g. antibodies, hormones, stem cells), be effective in treating hyperhidrosis?
  8. What is the most effective severity scale that can be used to determine if a person is eligible for hyperhidrosis treatment?
  9. What is the safest and most effective surgery for hyperhidrosis?
  10. How safe are hyperhidrosis treatments at different stages of life, e.g. childhood, pregnancy and breastfeeding?

Read the press release here.

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West Midlands Trial for Underarm Sweating

Can you help?

We are seeking patients for a new clinical trial into a novel treatment for primary axillary hyperhidrosis in Sutton Coldfield/Birmingham.

A new topical anticholinergic drug preparation (glycopyrrolate) is being trialled at an approved clinical trial centre based in Sutton Coldfield, Birmingham (West Midlands). Recruitment has started for the registration study and the investigators are seeking interested and motivated patients with primary axillary hyperhidrosis who live locally or who are willing to travel for regular visits (travel expenses will not be paid). Local ethical committee approval has been received for recruitment for the trial.

The study will be in two parts:

Phase I, which lasts for one month, is double-blinded.
Phase II is for an additional 16 months of using the active drug.

Inclusion Criteria:

Men or women 18-65 with BMI 18-32
Axillary Hyperhidrosis with a HDSS score of 3 or 4
Females must be on effective contraception for at least 3 months before 1st dose, during study and at least 1 cycle post study.

Exclusion Criteria:

Secondary hyperhidrosis
Previous surgical treatment for Hyperhidrosis
Botulinum toxin treatment for Hyperhidrosis in the last 4 months
Active or clinical history of asthma or chronic bronchitis

If you wish to find out more about the clinical trial then please contact (tel: 0121 308 4373, email: [email protected]) for more information.

Priority Research Questions

The Hyperhidrosis Priority Setting Partnership has looked at the 605 research questions submitted from the first survey and grouped the similar questions to produce a shortlist of 45 questions.

They would now like your help to shorten this by choosing questions which are most important to you in the interim survey. This will form the basis of the final list of questions to be finalised in the workshop in November to produce the priority research questions for hyperhidrosis. To take part in the survey, click here or use the QR code.

The project is being facilitated by the James Lind Alliance who have a wealth of experience with Priority Setting Partnerships and is supported by the UK Dermatology Clinical Trials Network and De Montford University in Leicester.

 

Are you able to help?

We are looking for hyperhidrosis patients who are will to talk about their condition and the impact it has on their lives for newspaper articles and/or TV. If you are interested please contact Dr Louise Dunford at De Montfort University via email: [email protected]

And don’t forget, the Hyperhidrosis Priority Setting Partnership Survey is still live. The survey should take no more than 10 – 15 minutes to complete. Follow this link to take part, or copy this link – goo.gl/q75WTq – into your browser, or use the QR Code below:

Calling all hyperhidrosis sufferers

You may have read a previous post announcing an exciting new project, the Hyperhidrosis Priority Setting Partnership (PSP). Here is a message from the PSP:

We are the Hyperhidrosis Priority Setting Partnership: a collaboration between De Montfort University, the James Lind Alliance and the UK Dermatology Clinical Trials Network. We are looking for your questions about treatments and management for hyperhidrosis (excessive sweating).

Hyperhidrosis is a common condition, affecting about one and three in every 100 individuals. It is estimated that nearly 365 million people in the world have hyperhidrosis. The condition has a profound effect on the quality of life.

We are currently running a survey where we aim to gather questions about treatment and management of the condition. Please fill this in if you are affected with hyperhidrosis, if you are a family member, friend or colleague of someone with hyperhidrosis, or if you work with hyperhidrosis patients.
The survey should take no more than 10 – 15 minutes to complete. Follow this link to take part, or copy this link – goo.gl/q75WTq – into your browser, or use the QR Code below:

Keep upto date with the project on Facebook and Twitter.

 

New review of evidence

A UK based review of the scientific publications relating to the treatment of hyperhidrosis has been undertaken. It will be published on line in January 2018 but the authors have asked us to share the key results with you here.

The project was commissioned by the National Institute for Health Research (NIHR) and undertaken by the Centre for Reviews and Dissemination at the University of York and the Institute of Health and Society at Newcastle University.

The review looked at the evidence for treatments of hyperhidrosis of the hands, feet and armpits. They concluded, as we already knew, that the evidence for most treatments of hyperhidrosis is limited. Although weak, they found consistent evidence to support using iontophoresis for treating hyperhidrosis of the hands.

Unsurprisingly, there is quite a lot of evidence concerning botox for treatment of the underarms but it was suggested that further research should look at the clinical effectiveness of this compared to iontophoresis.

In terms of cost effectiveness for the NHS, it was concluded that the treatment sequence for treating the underarms should be iontophoresis, botox, medication, curettage and ETS as the last resort which fits in with the advice we give on this site.

The summary document aimed at patients can be downloaded by clicking here.