The Young Persons Advisory Group in Tirana
On 15th September 2017, the first YPAG in Albania has been launched, corresponding to a new chapter of iCAN, named ‘KIDS Albania’.
KIDS Albania is promoted by Consorzio per Valutazioni Biologiche e Farmacologiche – Dege e shoqerise se huaj, Albanian Branch Office of CVBF, in collaboration with the University Hospital Center Mother Teresa and the TEDDY Network (European Network of Excellence for Paediatric Clinical Research).
Consorzio per Valutazioni Biologiche e Farmacologiche – Dege e shoqerise se huaj is a private Contract Research Organization (CRO) established in 07/05/2015 with the mission to conduct GCP (Good Clinical Practice) clinical trials and support companies willing to conduct clinical research in Albania. It provides a full-service support offering one-stop local solutions to investigators, sponsors, CROs and research institutions thanks to a professional team, able to provide insight on the overall clinical research strategy and help bringing success to a clinical research program.
University Hospital Centre “Mother Teresa” in Tirana is a tertiary level Hospital and the only academic and Research Hospital Centre in Albania. Paediatric Intensive Care Unit treats postoperative patients (abdominal and cardiac surgery and sometimes neurosurgery patients) as well as medical severely ill patients with neurological, rheumatic, malignant pathology, and poly-traumatised patients.
The European experience in clinical research and the collaboration with CVBF will represent a benefit and a driving factor for the YPAG in the promotion and understanding of the clinical research by the YPAG.
The YPAG is composed by 23 young people (new members can be added whenever they apply), age range 11-17 years, both including young patients and healthy youngers. The YPAG won’t be associated with a particular health condition or disease.
Members must have a good knowledge of English, according to their age.
Members have been recruited through the hospitals and the patients’ associations, by means of schools, associations, friends of patients and their families and have been selected according to their motivation and interest in improving health research.
The group will meet every 4-6 weeks. The first meetings will be focused on learning about the research process. Education, in fact, will be an important aspect in the development of the YPAG. To address the objectives of the group, education will be thorough, relevant, and ongoing as well as curriculums will be built around evidence-based medicine or epidemiology that are aimed at adolescents exist. The training team will have different professionals involved, such as principal investigators and research nurses, psychologists, pharmacologists, etc.
There will be an internal Steering Committee chaired by a leader and will be responsible for the planning and coordination of the activities as well as for the external communication. The YPAG will be regulated by a kids’ chart defining the frequency of the meetings (approximately every six weeks), the activities and a behavioral code.
Collaboration with the already existing YPAG will be enhanced since learning with peers will be of great value for the group and can allow young people to test their skills with partners and to interact without reverence. The peer education constitutes, indeed, an educational proposal in which some members of a group are trained to play a tutorial role. Peer education often helps to promoting relationship of mutual education, as recommended by modern development psychology.
- Manika Kreka, Team Leader, Paediatrician at Hematology Unit of the University Hospital Centre “Mother Teresa” and Medical Director at CVBF Albania.
- Ornela Cullufe, Researcher at CVBF Albania (Development and Networking area)
- Peer support for young patients
- Advocacy for children, patients and participants in clinical trials (YPAG can help to inform children and young patients about the process to be involved in a clinical trial)
- Advise young people on research
- Raising public awareness
Provide Young People with:
- Information on research
- Participant, Patient documentation and materials such as apps
- Clinical trial protocols
- Supporting researchers e.g. in trial design and delivery and prioritizing future research
- Increase awareness on clinical research by working with the schools (European Science Week): approaching pediatric research to schools
- Increase awareness on clinical research through the different means of communication (approaching pediatric involvement in research to the society)
- Report on YPAGs activities in scientific events
CVBF Albania and the University Hospital Center Mother Teresa will support the YPAG in terms of organization and coordination, with particular reference to:
- Organizational secretariat;
- Organization of training courses;
- Development and management of a dedicated website and its social media channels;
- Organization of internal meetings and national/international events (including logistical supports).
The YPAG will be further supported, in the organization/implementation of its activities, by a team of pharmacologists, pediatricians, child psychologists, investigators, research nurses and communication experts.
The YPAG will be coordinated by a Steering Committee composed by a restricted group of young people who will be responsible for the planning and coordination of the activities as well as for the external communication.
KIDS Albania Meetings
Meeting held on ‘Clinical Trials’: Blood donation awareness
Meeting held on ‘Biomedicine and Drugs’
Meeting held on ‘Basic Research’
Welcome meeting of Dr. Charlie Thompson – the founder of iCAN, Dr.Claudio Fracasso- the scientific director of iCAN and Dr. Donato Bonifazi and Mrs.Mariangela Lupo from TEDDY network.
- “Role of clinical trials in drugs’discovery and development. Specific aspects and moments of interests”.
- KIDS Albania friend of Rare Disease Day
- Basic first aid.
Meeting held on ‘Iron Deficiency Anemia’
Meeting held on – ‘Adolescent growth and Development’: ‘Visit at the laboratories of Pharmacy Faculty’
Meeting held on “Food and seasonal allergies”: Visit at the cabinet of Paediatric Radiology.