It is estimated that there are currently around 3.603 people affected by ALS in Spain, according to data from the 5th ALS Observatory 2024. However, since a National ALS Registry Platform does not exist, this figure has been calculated based on uneven and heterogeneous information provided by the different autonomous communities.
Because the prevalence of ALS is low, it is considered a rare or orphan disease, which leads authorities not to prioritize it. Frequently, such diseases are neglected, lacking sufficient resources for research or to meet the multiple care and support needs of patients.
Moreover, the significant differences among patients in how the disease begins and progresses make it difficult for scientists to create homogeneous patient groups for studying ALS in humans. This hinders research progress and makes finding an effective treatment more challenging.
Additionally, analyzing the current socio-health situation of patients is crucial to maximize their quality of life. ALS is incurable due to the limited understanding of the disease’s causes and mechanisms. However, patients’ quality of life—and even survival—can change significantly with appropriate medical intervention.
The registry would allow us to:
- Identify patients suitable for inclusion in clinical trials at the right time.
- Promote the creation of specific research lines.
- Encourage the collection of tissue or blood samples, which are extremely valuable for future studies.
- Aid in healthcare planning and proper allocation of resources.
- Provide doctors and scientists with epidemiological data.
- Connect patients with the research community.
For these reasons, we need a National ALS Registry Platform with clinical and socioeconomic data, which has not existed until now due to a lack of financial resources. Currently, the Luzón Foundation is collaborating with the Networked Biomedical Research Center (CIBER) and TRICALS to promote the collection of high-quality data and its thorough analysis in the European ALS patient registry platform.
To date, €90,000 has been contributed to strengthen the National ALS Patient Registry.