The new digital era helps us speed up processes, involve the affected patient and advance with better knowledge when he or she is a direct participant in registries and studies. In this article we will present some solutions to rare lung diseases.
¿Qué is what can be done and what solutions to the rare lung diseases have?:
- Advance in the development and implementation of new diagnostic techniques biotechnological that allow testing to be carried out remotely.
An example is the genetic diagnostic kit for alpha-1-antitrypsin deficiency, developed by Grifols: which, based on a blood or saliva sample, allows the analysis of the most important genetic mutations causing this pathology. - Favor the access to comprehensive online care plans that allow specialized healthcare professionals such as Coach to guide patients through adapted and individualized respiratory physiotherapy and physical activity programs.
- Create or participate in secure environments for managing personal health data that comply with GDPR regulations (General Data Protection Regulation) of the European Union. This may allow patients to share their personal health information with greater confidence through specialized platforms in comprehensive patient care and R&D or may be part of Registries managed by networks of expert clinicians and patients, such as the ERN-Lung project.https://ern-lung.eu), among others.
- Increase knowledge of the patient about the importance of using informed consent when participating in registries, platforms and/or clinical studies
- As an organization to work in favor of the patient to support and actively participate in the new environment as intermediary prepared in digital and social health. In this way, we will be able to guide and advise people to gain a better understanding of their health and to advance in finding therapies that improve their quality of life and treat their illness effectively or even cure it.
Patient Records
The patient records In rare or minority diseases they are especially important due to the small number of people affected by each of them.
They usually aim to document the natural history of the disease, including the collection of demographic data, medical results related to the disease, treatments administered and the evolution of the information, genetic data, quality of life, comorbidities, factors influencing lifestyle, etc.
Thanks to these data, registries serve to improve patient care by providing relevant and up-to-date information, being able to monitor this population, recruit volunteers for clinical trials, evaluate and monitor the efficacy and safety of treatments and the cost-effectiveness of new interventions, etc.
The "Patient Reported Outcomes" or PROs, whaté are
The PROs (Patient Reported Outcomes) are any report of a patient's health status that comes directly from the patient, without being interpreted by a physician or other person.
They are used to inform and guide patient-centred care, clinical and health policy decision-making and are an important component of health systems learning. This information may be presented in reports requested by drug authorities or health systems, for decisions on whether to introduce or approve new comprehensive care plans and/or access to treatments that are under evaluation.
They are part of a process of evaluation of health technology that the administrative authorities carry out in many countries, to determine the cost-benefit of a treatment, whether or not it increases the quality of life and the life expectancy of the person.HTA, Health Technology Assessment)
Last updated on 7 March, 2026
