Your Category: Clinical Research

ERDERA trainings template (5)

Diagnostic Research Workstream – Session 2: Data Sharing, Data Management & Ethics

September 25 @ 1:00 pm - 2:00 pm
Intended for researchers, clinicians, data managers, ERN and National Mirror Group members involved in or interested in ERDERA diagnostic research.
Scientist reading a journal article 2026

Longitudinal progression, metrics, age-dependence, and modifiers of ataxia severity in SCA27B: a multicentre study of 219 patients

The multicentre observational study analysed 661 assessments from 219 people with SCA27B to examine disease progression, clinical outcome metrics and demographic or genetic modifiers.
Conference "Advancement of Treatments for Rare Diseases" in Cyprus, June 2026

Cyprus conference connects European research priorities with the path to rare disease treatments

At the “Advancement of Treatments for Rare Diseases” conference in Nicosia, European and national policymakers joined clinicians, researchers, regulators, industry representatives and patient advocates to examine how stronger coordination can translate scientific progress into better prevention, diagnosis, treatment and access to care for people living with rare diseases.
ERDERA clinical trial call

ERDERA Clinical Trial Call – Call Text

Call text draft setting out rules, eligibility and staged application process for the ERDERA Clinical Trial Call 2026.
Situating ethics in the research continuum

Introductory webinar: Situating ethics in the research continuum

July 24 @ 3:00 pm - 4:00 pm
This webinar will present a theoretical framework for situating ethics across research activities. The framework will then be brought to life through a relevant case study discussion, giving participants a concrete reference point for the episodes ahead.
2

ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases

ERDERA (the European Rare Diseases Research Alliance) has opened its Clinical Trial Call to support multinational early-phase clinical trials in rare diseases. The call will fund studies designed to generate robust clinical evidence, strengthen regulatory readiness and make rare disease trials more feasible across countries.
Photograph of neurons - CC BY-NC-SA 2.0 by Birth Into Being via Flickr.

NCL Foundation launches €200,000 prize to connect rare and common neurodegeneration research

The NCL Foundation has opened the Rare-to-Common Neurodegeneration Impact Prize, a €200,000 research award supporting collaborative projects that connect CLN3 Batten disease research with more common neurodegenerative or age-related disorder
Clinical-trials-from-research-to-real-care

Clinical trials: from research to real care

Clinical trials test new treatments or care approaches to assess their safety and efficacy in people. In rare diseases, they are a critical step in turning research into real clinical benefits.
European Human Genetics Conference - Rotterdam, The Netherlands June 12-15, 2027

European Human Genetics Conference 2027

June 12 - June 15
The conference will take place in Rotterdam on 12–15 June 2027 and is planned as a hybrid event by the European Society of Human Genetics.
uropean Human Genetics Conference (ESHG) 2026

At ESHG 2026 in Gothenburg, ERDERA’s diagnostics work reviewed early progress and the next phase ahead

At the European Human Genetics Conference 2026 in Gothenburg, ERDERA’s Diagnostic Research Workstream reviewed progress, highlighted early results and used a major European genetics meeting to examine how advances in data sharing and genomic analysis may strengthen rare disease diagnosis across countries.
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