EHDN Newsletter: A special pandemic issue

The European Huntington’s Disease Network (EHDN) Newsletter appears three times a year. This year’s second edition is dedicated to the impact of Covid-19: the problems it has created but also the adaptability and the positive trends.

In the newsletter, you can learn more about telemedicine. Here, Alzbeta Mühlbäck, our own doctor, states:

– Though we would have preferred never to have known Covid-19, it has provided us with a golden opportunity to develop high-quality telemedicine for the future and to establish the infrastructure that will improve care in under- served regions of Europe.

Different perspectives

Moreover, the issue provides different perspectives on the pandemic’s impact: one from a family’s view and one from a doctor’s view.

Cristina Ferreira has a mother in the late stage of the disease progression:

Cristina together with her mother. Photo: Private

– My first concern, at the beginning of the crisis, was to isolate her as quickly and effectively as possible. Next I had to obtain her medication and other items necessary to ensure her comfort for the coming months.

However, she thinks telemedicine holds huge promise for patients like her mother:

– Because it removes the need for physical displacement and can actually make consultations more efficient.

Today, going to the hospital in Lisbon is complicated and expensive:

– Taking my mother to the hospital involves complicated logistics, high cost – around 100 euros a trip – and is physically tiring for her.

Hugh Rickards at the National Centre for Mental Health in UK says their clinical team has developed a more proactive approach:

– We’ve done this in order to keep as many of them [Huntington’s disease patients] as possible out of hospital, and this has meant organising video or phone consultations with the families, with the help of our local specialist Huntington’s advisor.

Research & Trials

Clinical trials have been significantly affected by the Covid-19 pandemic. Research labs had to close partially or completely during lockdown. However, many Huntington’s disease studies have continued to make progress during Covid-19:

– The Roche studies of tominersen (previously known as RG6042) continue, with recruitment into the Generation HD1 trial recently completed. WAVE Life Sciences’ PRECISION HD1 and HD2 studies, and associated open-label extension studies, continue. The University of Düsseldorf’s HD-DBS trial has temporarily paused recruitment for safety reasons, during the pandemic, but continues to support sites to maintain safety follow-up assessments of recruited participants. Triplet Therapeutics’ SHIELD HD natural history study has started recruiting at a small number of sites, with the first participant screened in May. Additional sites will be added as local conditions and guidance allow, says Jenny Townhill and Tim McLean.

Read the full issue here.