Are there any Pro-patients out there?

What is a Pro-Patient?

A patient/ friend or family member of a patient or patient advocate who takes on a leadership role in helping those with a medical condition.

What does a Pro-patient do?

A Pro-patient might organise support groups, advocate for individual patients and even advance treatments and help organise care by establishing and running professional organisations.

How do I get involved

Any Pro-patients out there? We’re looking to facilitate peer to peer and specialist to patient information exchange and support. www.health-shared.com was created to allow you to make and share content with the wider healthcare community.

Join us by signing up at www.health-shared.com

Contact Us

We have been experiencing some problems receiving messages from the Contact Us page over the last few weeks (End of September/early November 2019).

If you have recently sent a message but received no response, please would you complete the form on the Contact Us Page again.

Thank you. 

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.

BBC3 wants to hear from 16 – 30 year olds!

Is something holding you back from getting active? Do you need help finding that motivation or advice? We have a top team that can give you that confidence to achieve your personal goals in 2019! New Year New You!
Our team of personal trainers hope to help promote body confidence to people from all backgrounds and situations who may have lost it or need some motivation to get themselves active again!

Contact: [email protected] with a brief introduction to yourself and a member of the team will be in touch to give you more information!

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: