GHELP at a glance

Framing

Hearing loss (hypoacusia) is a public health issue, not only because it significantly impacts the cognitive, emotional, educational and social development of the child, but also due to the immense cost to health systems (>€3,500 /child). In epidemiological terms, it affects five out of one thousand children (WHO). In 2014 it was estimated that 264,334 children in southwest Europe were potentially impaired (INE, PORTADA, INSEE). Hypoacusia is mostly caused by changes in one or a few genes. Therefore, genetic testing is very useful both as diagnosis, or for predicting the type and progress of the condition and to establish customised treatment. Furthermore, it helps avoid other more expensive and extended tests, which in turn reduces costs and offers benefits to patients. Despite such great potential, there are still no validated genetic tools, and current universal programmes for the early detection of hypoacusia in children are not 100 % effective and have not been improved in recent decades. GHELP is a transnational cooperation project that has brought together eight entities from seven southwest European regions in a common project to innovate in hypoacusia detection and treatment: to combine knowledge and technology in order to switch from symptom treatment of this illness to a customised medicine centred on fighting the illness.

Objectives:

1 – To demonstrate the medical benefit of a gene panel of the 183 genes already scientifically linked to the condition and analysed, using NGS (Next Generation Sequencing);

2 – To study the economic, social and health feasibility of this tool applied to current detection programmes of the Health Services;

3 – To reduce the asymmetries between knowledge and innovation in this area, through a pioneer training programme for medical professionals. A network of agents throughout the entire value chain – universities, hospitals, companies and beneficiaries (associated partners) – will enable GHELP to provide the basis for the future formula of a customised therapy for hearing impairment.

Plano de Trabalho

#1 Retrospective Validation of the genetic tool

Lead by: 
Biodonostia

Main Objectives:
1) Drafting informed consent documents and obtaining the necessary approvals from ethic committees.
2) Drafting the sheet to gather information from patients and the data base

#2 Prospective validation of the genetic tool

Lead by: : 
Centre Hospitalier Universitaire de Toulouse

Main Objectives:
1) Drafting informed consent documents and obtaining the necessary approvals from ethic committees.
2) Drafting the sheet to gather information from patients and the data base

#3 GHELP Training and Mobility Program

Lead by: 
Universidad de Navarra

Main Objectives:
1) Create the GHELP Training Program to Universities and higher education centers, institutes, laboratories and research centers, hospitals and clinics.
2) Create Guidelines and advice for clinical practice and genetic counseling, Illustrative clinical reports including the steps taken to interpret variants and Illustrative genetic study request form and clinical protocol.

#3 Draft reports and hold meetings to come up with improvement proposals to the current hearing loss detection programs for children

Lead by:  
Instituto de Salud Pública y Laboral de Navarra

Main Objectives:
1) Draft a report explaining the outcome of the GHELP project for Public Healthcare services and Deaf Patient associations in the participating SUDOE regions.
2) Conducting a longitudinal and economic study on the implementation of this universal tool in the SUDOE territories, as part of the existing healthcare programs for the early detection of hearing loss among children and organize meetings with public healthcare administrations and Deaf Associations

Horizontal Work Packages

#1 Project Management

Lead by: 
Universidad de Navarra

Main Objectives:
1) Structures, responsibilities and procedures to manage and coordinate the day-to-day of the project.
2) Policy and technical decision-making bodies regarding the project and its competences.
3) Internal communication system within the partnership.
4) Internal organization foreseen to draft the execution reports.
5) Financial management of the project

#2 Project communication

Lead by: 
Hospital CUF Porto, S.A

Main Objectives:
1) Creating the logotype, as well as the Bi-yearly Newsletters and the Poster with information about the
2) Design the Website to  website which will serve to make the GHELP known to the general public in order to maximize the impact of the project.
3) Communicate the project on social networks.
4) Creating the communications materials to support the final meeting.

#3 Acompanhamento e avaliação do projeto

Lead by: 
Centro Hospitalar Lisboa Central, EPE Hospital de Dona Estefânia

Main Objectives:
1) Monitor the project, analising the results and the reports sending by the partners. 2) Procedures planned to manage risk and control quality