Proyectos

Código

PT23/00087

Investigador/a principal

Arnau Valls Esteve

Rol

Individual

Año de inicio

2024

Año de finalización

2026

Import total

374854€

Objectius

ISCIII_Arnau Valls

Código

AC23_2/00026

Investigador/a principal

Daniel Natera de Benito

Rol

Participant

Año de inicio

2024

Año de finalización

2026

Import total

72500€

Objectius

The PROMOT network aims to establish a Learning and Knowledge Mobilization Platform (LEAP FORWARD) for developing a precision medicine approach tailored to rare diseases (RDs). This involves an innovative natural history study design, the adapted Master Observational Trial (MOT), and artificial intelligence (AI). The approach integrates within and between diseases, combining disease-specific data, common data elements, and a biological target discovery platform using AI. It addresses unmet needs in RDs, especially regarding prognosis and clinical trial readiness, potentially identifying biomarkers for treatment and offering a protocol ready for clinical trials.
Objectives: 1)Developing a MOT approach using oculopharyngeal muscular dystrophy (OPMD) as a flagship disease; 2)Conducting a pilot MOT across 4 neuromuscular disorders (OPMD, myofibrillar myopathy, congenital myopathy, congenital myasthenia); 3)Documenting MOT feasibility across different legislations (Canada and Europe, Spain); 4)Developing LEAP FORWARD, combining MOT with machine learning to identify biomarkers for disease severity and progression, with an interface for patients and healthcare professionals; 5)Providing guidance on "engagement, ethical, legal, and social issues" (EELSI) and proposing EELSI frameworks for future research in "next-generation deep medicine."
The PROMOT network will develop a phenotypic MOT protocol, including Real-world data (disease-specific variables) and a prospective protocol (target variables). WPs 1-3 will: 1)Identify and select variables from medical records; 2)Classify variables within an ontological system; 3)Develop a phenotypic MOT protocol using standardized, multimodal outcome measures. Phase 1 will use data and biological samples from an ongoing OPMD natural history study to support LEAP FORWARD infrastructure development. Phase 2 will deploy the MOT protocol in a natural history study across 4 neuromuscular disorders, demonstrating feasibility and effectiveness.

Código

PI23/00006

Investigador/a principal

Rafael Artuch Iriberri

Rol

Coordinador

Año de inicio

2024

Año de finalización

2026

Import total

228750€

Objectius

ISCIII_Rafa Artuch

Código

AV20063 RECERCA-FARMAPRED

Investigador/a principal

Judith Usall i Rodié

Rol

Participant

Año de inicio

2024

Año de finalización

2026

Objectius

ISCIII_Judit Usall

Código

230227

Investigador/a principal

Susana Ochoa Güerre

Rol

Participant

Año de inicio

2024

Año de finalización

2025

Import total

188027,33€

Objectius

EUROPEAN COMMISSION_Susana Ochoa

Código

ACE135/24/000051

Investigador/a principal

Arnau Valls Esteve

Rol

Participant

Año de inicio

2024

Año de finalización

2025

Import total

23416,75€

Objectius

ACCIO_Valls Esteve, Arnau

Investigador/a principal

Juan Albalate Royo

Rol

Individual

Año de inicio

2024

Año de finalización

2024

Import total

3000€

Objectius

DEPARTAMENT DE SALUT_Juan Albalate

Código

FPU22/00395

Investigador/a principal

Angel Montero Carcaboso

Rol

Individual

Año de inicio

2023

Año de finalización

2027

Import total

104207,27€

Objectius

MINISTERIO DE UNIVERSIDADES_Angel Montero

Código

101137169

Investigador/a principal

Sergi Navarro Vilarrubi, Sílvia Ricart Campos

Rol

Coordinador

Año de inicio

2023

Año de finalización

2028

Import total

1243100€

Objectius

PALLIAKID is an interdisciplinary project aiming to evaluate the feasibility, effectiveness, and cost-effectiveness of novel interventions for children, adolescents and young people (AYA) with palliative and end-of--life care needs in different healthcare systems across Europe, with a focus on those factors that influences the active patients' and family caregivers' engagement. PALLIAKID responds to several needs or gaps identified by the consortium clinical partners, grouped into three cornerstones of paediatric palliative care:
1) Early identification of children and AYAs with palliative and end-of-life care needs,
2) Comprehensive assessment of children and their family caregivers' needs,
3) A comprehensive, personalised, interdisciplinary care plan including Advance Care Planning.
The proposed solution entails three main results: PALLIAKID Eary Detection System, PALLIAKID intervention (Needs assessment, Advance Care Planning and Patient Journey digital platform); and PALLIAKID XR-based capacity-building program for professionals. In addition, the project will develop policy recommendations, guidelines and standards for patient-centred communication, together
with a scale-up strategy to guarantee the project result's’ sustainability and impact. In this sense, PALLIAKID aims to reduce taboos and misunderstandings of paediatric palliative care with its activities and the planned Public Engagement Strategy. The consortium is composed of 19 entities with the needed and complementary expertise and knowledge to respond to the proposed objectives, including the triad perspective (child-family-professional): five clinical sites to co-design and test the PALLIAKID solutions, two European networks, four experts in the needs assessment and ACP tools to be adapted (HexCom and IMPACT), three technological partners, one expert in evaluation, three experts in SSH and one expert in data and ethical issues.

Código

101136262

Investigador/a principal

Francesc Palau Martínez

Rol

Participant

Año de inicio

2023

Año de finalización

2027

Import total

668112,5€

Objectius

BETTER aims to offer a new paradigm and a fresh approach for achieving a twofold aim:
(a) Easier and faster access to functionality offered in closed, siloed systems residing in hospitals and medical and clinical research
settings, while also meeting the need for
(b) Lower, affordable and rationalised costs for integration and achieving reduced error-prone operation.
In order to (a) enable health data sharing across national borders, (b) fully comply with present GDPR privacy guidelines and (c)
innovate by pushing research beyond the state of the art, BETTER proposes a robust decentralised infrastructure which will empower
researchers, innovators and healthcare professionals to exploit the full potential of larger sets of multi-source health data via tailored
made AI tools useful to compare, integrate, and analyse in a secure, cost-effective fashion, with the very final aim of supporting
improvement of citizen’s health outcomes.
In BETTER we promote 3 use cases involving 6 medical centres located in the EU and beyond, where sensitive patient data, including
genomics, are made available and analysed in a GDPR compliant mechanism via a distributed analytics (DA) paradigm called the
Personal Health Train (PHT). The proposed use cases focus on evidence-based research on the following pathologies:
(1) paediatric rare diseases, (2) retinal diseases and (3) autism spectrum disorders. Within those use cases innovative tools, technologies and digital solutions will be researched, developed and validated in real world scenarios.
Furthermore, the project innovates by developing an ELSA-aware data science and AI methodology, including tools to support the various stakeholders (AI experts, medical experts and clinicians, …) in their respective roles in these AI development projects.