ERN-Skin Newsletter

Spring & Summer 2020

 
   
 
 
 

Covid-19 and rare skin diseases

 
 
 
 
 
 
   
 

ERN-Skin recommendations

See our multilingual recommendations for COVID-19 and rare skin diseases on the ERN-Skin website

COVID-19 Assay

A new Covid19 Clinical Assay has been developed on rare skin diseases thanks to our European and French Networks!

"COVID-19 and rare skin diseases. European observational study (data research) during an epidemic".

This study concerns paediatric and adult patients with rare skin diseases and suspected or confirmed COVID-19 infection who consult a medical team that is part of the European Reference Network ERN-Skin or the Rare Skin Diseases Health Network (FIMARAD). Professor Christine Bodemer (Hôpital Necker-Enfants malades, Paris, France) is the principal investigator.

The main objective of this European observational cohort study (research data) is to determine the impact of a COVID-19 virus infection in a cohort of patients with rare skin diseases and particularly if these rare diseases and their treatments are risk factors of infection severity.

This study is under registration on the following website :  https://clinicaltrials.gov/

If you have any other question, you can contact the ERN-Skin CoordinationTeam : catherine.champseix@aphp.fr

 
   
 
 

Registry

 
 
 
 
 
 
   
 

The ERN-Skin registry prototype is ready!

Funding to create the new ERN-Skin registry has been received! 

The project in its first phase has started and is looking at a first delivery of the registry with the minimum dataset.

A prototype is due to be delivered on the 15th of June. A few expert users will be trained on it and will use it in a test environment. Outcome of tests will be shared with the different groups of the project.  

 
   
 
 

CPMS

 
 
 
 
 
 
   
 

More ERN-Skin CPMS users!

Activity on CPMS has been reduced since March due to Covid-19 crisis, for all ERNs. However, new panels are now being initiated, new meetings are due to take place in June for ERN-Skin, week 26.

 
 

Some history can be interesting to look at. The activity on CPMS for ERN-Skin has been slowly increasing over time, and more rapidly since mid-2019. ERN-Skin is showing an interest for sharing patient cases over this tool; the increase is quite remarkable and this was highlighted by the European Commission in a recent analysis.

 
   
 
 

Events

 
 
 
 
 
 
   
 

The ERN-Skin board meeting is confirmed on October 1 & 2

 
 

October 1 & 2, 2020 - Paris, France & Online

Due to the Covid-19 pandemic and an earthquake in Croatia, the University Hospital Centre Zagreb will sadly not be able to host this event this year. 

The board meeting 2020 will take place, mostly online and partly in Paris. 

 
 

“The Story of My Skin”: congratulations to the winners!

As every year, the ERN-Skin took part in the promotion of the art contest “The Story of My Skin”, organised by the FRT Rare Skin Diseases Network. Admire the winners’ artworks here.

 
   
 

Our participation in the 10th ECRD

The ERN-Skin is proud to have been a partner for the European Conference on Rare Diseases and Orphan Products!

You can see on their website the poster we presented.

 
   
   
 
 

Publications

 
 
 
 
 
 
   
 

The 2020 ERN-Skin publications

The 2020 publications which acknowledge the ERN-Skin

 
   
 
 

Research

 
 
 
 
 
 
   
 

EJP-RD News

  • Academia developing medicines for rare diseases to receive free EMA scientific advice. Posted on 06/24/2020 on EJP website
  • Next General Assembly :  September 15-17, 2020 – On line
  • International Summer School on Rare Disease Registries and FAIRification of Data : September 28, 2020 - October 2, 2020  On line. 
    • Deadline for registration : July 19, 2020. An e-mail will be sent, by 31 July  2020, to the selected participants (see EJP website).

Next Call

  • IMI2 - Call 23
  • Call ID: H2020-JTI-IMI2-2020-23-two-stage
  • Action Type: RIA – Research and Innovation Actions
    • Topic 1: Returning clinical trial data to study participants within a GDPR compliant and approved ethical framework
    • Topic 5 :  Shortening the path to rare disease diagnosis by using new born genetic screening and digital technologies
  • Stage 1 submission deadlineSeptember 29, 2020 (17:00 Brussels time)
  • Stage 2 submission deadlineMarch 17, 2021 (17:00 Brussels time)

COVID-19 Assay

A new Covid19 Clinical Assay has been developed on rare skin diseases thanks to our European and French Networks! 

"COVID-19 and rare skin diseases. European observational study (data research) during an epidemic".

This study is under registration on the following website :  https://clinicaltrials.gov/

 
   
 
 

Focus

 
 
 
 
 
 
   
 

The ERN-Skin expanded its team!

We are pleased to welcome Gabrielle Soulard as a new ERN-Skin staff member. She joined us in April 2020. She will support the coordination team and the development of the ERN-Skin website.

After several experiences in charities in France and abroad, she joined the Fondation René Touraine in september 2020 as a volunteer and met the rare skin diseases community. 

 
   
   
 

Co-funded by the European Commission