Consortium meeting in Prague October 1st 2021

1st of October the Healthe-rnd consortium was finally able to meet again face-to-face in Prague.  Most of the partners were able to attend despite the ongoing restrictions due to the pandemic.  The ones who couldn’t make it to Prague attended on Zoom. It was great to see each other again and also meet new faces as there have been additional people brought into work in the project.

Due to the pandemic the development of the project has been delayed and it has been extended until 2023. 

The creation of the Quality of Life instrument in HD-Needs is moving forward although it has been seriously delayed.  All interviews are done online, but the reports from the sites doing the interviews is that it works well.  Based on the interviews done so far it stands out that the cognitive and psychiatric/emotional problems cause a lot of negative effects in people’s lives.  Fear for the what the future may bring is also being brought up by many. 

The setup of the digital platform in HD-ehelp  is also moving forward.  The partner in charge of setting it up is NeLL.  The partners in all the participating countries are interviewing people to identify the needs that should be met through the HD-ehelp.  In the interviews done so far, the psychological aspects of the disease is brought up by many.  People need support and someone to talk to.  HD gene carriers express a wish for support to live their life as normal as possible and make the best out of life and cope with the disease symptoms as they evolve.

In Prague there were a lot of discussion on what kind of services the ehealth platform should accommodate.  Many ideas were exchanged and from the patient side it was stressed that there should be room for consultations with health care professionals, organisation of support groups, etc.

One of the main objectives for HD-ehelp is to lower the threshold for people to get in touch with health care services and accommodate consultation and support at the level needed.     

In the HD-Proof part of the project the ehealth platform will be used by the 5 Healthe-rnd clinics to see whether patients and companions finds it helpful and if the use of the e-services increase their quality of life.  In the coming months the partners are making plans for what kind of services they will offer through the ehealth platform. 

The people on the photo are (from left to right): Kristýna Dolečková (Prague, Czech Republic), Olga Ulmanová (Prague, Czech Republic); Sabrina Maffi (Rome, Italy), Eugenia Scaricamazza (Rome, Italy), Alzbeta Mühlbäck (Ulm, Germany), you J, G. Bernhard Landwehrmeyer (Ulm, Germany), Anna Coffey (Galen, UK), Ramona Moldovan (Manchester, UK), Wiebke Frank (Ulm, Germany), Jiri Klempir (Prague, Czech Republic), Michael Wallner (2mt, Germany), Franziska Steck (Ulm, Germany)

On the projector screen from left to right: Steve McKenna (Galen, UK), Jennifer Hoblyn (Dublin, Ireland), Emer O’Malley (Dublin, Ireland), Muthukumaran Thangaramanujam  (Dublin, Ireland)