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
• Fundraising

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 launch day

The event has taken place at the University Hospital Center “Mother Teresa”, Service of Paediatrics, in Tirana. It was attended by about 20 young patients and healthy youngers and their parents willing to advocate children in healthcare especially participants in clinical trials.

During the event, Manika Kreka the team leader of the group presented the main goals and activities of the YPAG and the iCAN network with a specific focus on what the KIDS Albania will concretely do and its mission. Some informative videos on clinical research were showed as well as the age-tailored informative materials prepared by CVBF during the clinical trials were presented to give them the idea of some practical activities they could be involved in.

Mariangela Lupo (Team Leader of the KIDS Bari) and Donato Bonifazi (Chief Executive Officer of CVBF) introduced this initiative and the contribution of the YPAGs widespread in the world with the mission to raise awareness about the importance of children’s involvement in the clinical trials, to support researchers in the design of clinical trials and in defining priorities for future research.

Moreover, during the meeting, the youths were provided with the outline of the group, a leaflet and a consent form for them and their parents to collect and ask the usage of their personal data and to give the consent for participating on this group.

Meeting held on ‘Clinical Trials’: Ice breaker meeting, Clinical Trials, Blood donation awareness

It was an ice breaker meeting where the youths were free to introduce themselves, to discuss, to share their experiences, as a possibility for them to know each-other better.

It was discussed how the meetings were going to be organized and were presented the pillars of the training plan that all the kids will attend during the first half of the 2018.

The youths were provided with some concepts on clinical trials in general and were involved in a very good discussion to make them aware of blood donation and the necessity of this act when they will become adults.

Meeting held on “Biomedicine and Drugs”

During this meeting were developed the first topic of training plan: Biomedicine and Drugs.

Two healthcares professionals explained the definitions and shared their experiences regarding paediatric diseases and the need to develop tailored formulations for kids.

Goals of the meeting were to:

• Learn about the importance of using effective and safe drugs for children.
• Introduce the process about diagnosis and treatment of paediatric diseases.
• Increase knowledge about the developmental physiology.

After the theoretical part of the meeting the KIDS were accompanied by two nurses to get acquainted with the hospital environment and some medical devices.

Meeting held on ‘Basic Research’

The topic of this meeting was ‘Basic Research’ with the goal to make the KIDS aware of the long process of drug development from the laboratory to the first in human use.

Manika Kreka and Ornela Cullufe held the lesson on Basic Research, discussing about what does the Basic Research mean, the process and the way through the drugs are discovered. They explained as well the long process and the experiments conducted during drug development, the preclinical, clinical research and the post-marketing drug safety monitoring. Moreover, some preclinical experiments were shown to the participants.

KIDS Albania were very honored to welcome in this meeting  Dr. Charlie Thompson – the founder of iCAN, Dr.Claudio Fracasso – the scientific director of iCAN and Dr. Donato Bonifazi and Mrs. Mariangela Lupo from the TEDDY Network.

Dr. Manika Kreka – the medical director of Consorzio per Valutazioni Biologiche e Farmacologiche and Team Leader of KIDS Albania group thanked the guests and welcomed Mr. Thompson on his speech.

Mr. Thompson introduced iCAN, the main objectives and activities of iCAN and the youth members had the opportunity to discuss for the way on how to improve the communication within the network.

Mr. Fracasso explained to the youth members the importance of YPAGs on clinical research and paediatric medicine in Europe and all around the world.

Prof. Erjon Troja, lecturer in Department of Pharmacy – Faculty of Medicine were invited to give to the KIDS a short presentation on clinical research: “Role of clinical trials in drugs’discovery and development. Specific aspects and moments of interests”.

KIDS Albania received a brief tour at the Faculty of Medical Technical Sciences setting. Msc. Anila Cake- lecturer of the Faculty gave information to the youth members about basic first aid, treatment procedures and some instructions with demonstration in mannequins.

KIDS Albania has become friend of Rare Disease Day with the aim to raise the awareness on the importance of research in rare disease field. A page dedicated to KIDS Albania has been published on the Eurordis website related to the Rare Disease Day. The youth members saw the official video of Rare Disease Day also translated on Albanian subtitles.

https://www.rarediseaseday.org/friend/1570

Meeting held on ‘Iron Deficiency Anemia’

The meeting has taken place at the Faculty of Technical Medical  Sciences.

Dr.Anila Godo Professor at the Faculty of Medicine, Paediatric Department and Doctor in oncology-haematology paediatric department presented an interesting and fruitful lesson with the topic ‘Iron Deficiency Anemia’ as the adolescents are at high risk of iron deficiency and anemia.

She taught them about the important role of iron in muscle function, energy creation, and brain development. As a result, a child with iron deficiency may have learning and behavioral problems.

She showed them a list of iron rich foods for teenagers, that they should include in their diet.

Meeting held on – ‘Adolescent growth and Development’: ‘Visit at the laboratories of Pharmacy Faculty’

KIDS Albania held their 7th meeting at the Faculty of Pharmacy, ‘ALDENT’ University.

At the first part of meeting the participants visited the laboratory of Faculty where Dr.Entela Haloci, lecturer at Faculty of Pharmacy, performed a several quality control test of drugs such as: dissolution test, tablet hardness, friability test.

The KIDS were acquainted with several herbal drugs and saw their internal structure on the microscope.

During the second part of the meeting  the KIDS attended a very interesting lesson: ‘Adolescent growth and Development’ from Dr. Agim Gjikopulli, a Pediatric Endocrinologist. As an introduction, he had prepared a slide with all the famous people such as: scientists, presidents, actresses who has suffered from chronic illness, giving faith and hope to our KIDS.

Meeting held on “Food and seasonal allergies”: Visit at the cabinet of Paediatric Radiology

In the first part of the meeting the KIDS visited the new cabinet of Pediatric Radiology where Dr.Blerina, Radiologist at Paeditric Unit, explained to them some terms regarding Radiography and how it works.

Three children of KIDS voluntarily performed examinations of abdomen, joints and soft tissues of neck.

The radiologist explained deeply how principles of physics learned in school, serves for conduction of radiographs (pulmons, heart, and other human organs)

During the second part of meeting, they attended a lesson from Dr.Irena Kasmi: “Food and seasonal allergies”, they shared their experiences and learned how to give the first aid in an allergie emergency.

The team leader Dr. Manika Kreka shared with the KIDS the winning essay of Olivia Ohmer “Why iCAN is important to me”, all of them liked it, and appreciated the girl for her writing.

Meeting held on ‘Summit 2018, Edinburgh’ and on ‘Patients Rights’.

The most important part of this meeting has been the discussion about the 2018 iCAN Research and Advocacy Summit held in Edinburgh. Six youth members of KIDS Albania participated on the Summit and on this meeting, they shared their experiences with the other members. One of the youth who participated in the event, Nesila Bylyku, brought to the KIDS a presentation with all the activities that took place during the summit. All together they explained what they learned from the presentations day-by-day, workshops on how to design clinical trials, how to create proper patient information sheet. The youth of KIDS Albania were excited to had the opportunity to meet the other YPAGs, make new friends and creating unforgettable memories together. Some photo captured during the week of Summit were shown as well.

During the second part of the meeting, Dr.Manika Kreka and Dr.Ornela Cullufe, gave a presentation on Patients Rights, the definition of the Patient, what is owed to the patient as a human being by medical caregivers, as well as by the institutions and people who support them.

During this meeting, Dr. Gentiana Cekani, social worker at Paediatric Unit, UHCT Mother Teresa held a lesson on ‘Acceptance of Diagnosis and the role of the society.’

She explained the importance of accepting the diagnosis and the strategies on how young people to cope the disease, the crucial role of family, siblings, friends and the creation of good relationships with healthcare providers.

As this was the 10^th meeting, we distributed Certificates of Participation to our KIDS in order to value their actively participation in the training phase and to encourage them for further activities of the group.

This meeting was organized to discuss about the survey dedicated to oral dosage forms that is developed in the framework of the WP8-11 of EPTRI.

The youth of KIDS Albania gave their suggestions on how to make the survey more clear and suitable for children. They translated it in Albanian language.

We celebrated with music and warm conversation with each other as this was the last meeting of 2018.

During this meeting we decided to open a mail address and instagram account for KIDS Albania group, so this will help us to disseminate information on our group and our activities.

The accounts are as below:

gmail: [email protected]

instagram: KIDS Albania

We had a new member on our group, the other members explained to him the objective and the activities of KIDS. He is very excited to join us.

We discussed about the EPTRI survey and its dissemination. Children will disseminate it in their schools (there are 5-6 highschools not only in Tirana and 2-3 secondary schools). Two members proposed to disseminate it through a website of their highschool where all the students are part of it. Two other girls proposed to write about the survey in a project that they should develope and that will be published in the school’s journal.

KIDS Albania will support Rare Disease Day 2019 campaign. We will raise awareness about Rare Disease Day in schools, will share posts and videos (in albanian language as well) through our instagram account.

Moreover, we discussed about the possibility of participating in a TV program on health where we can promote our group and talking about Rare Disease Day too.

In the second part of the meeting, Dr.Manika Kreka and Dr. Ornela Cullufe, showed them a powerpoint with information on ‘Most prescribed drugs in children and teens’ and ‘Most common travel diseases’.

KIDS Albania has the great opportunity to get involved in the c4c project, giving their opinions on many tasks of the project. c4c project is a large collaborative European network that aims to facilitate the development of new drugs and other therapies for the entire paediatric population.

The voice of children and young people will be the focus of this project.

You may find more information regarding c4c project in this link: https://conect4children.org

The 13^th meeting were held to discuss on task 7.3 regarding assent/consent templates.

In the first part of meeting Manika and Ornela gave a presentation to the youth reminding what is assent and consent, how their forms should be developed and all the elements that must be included. They explained the activities and the process of reviewing templates.

KIDS Albania did these activities collectively. Firstly, we read the guidance and instructions for researchers, model information and assent form and gave a few comments on templates. We did the same for consent templates.

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The meeting started with the presentation that Nensi Semanaj, a member of KIDS Albania, held at EPTRI (European Paediatric Translational Research Infrustructure) 3^rd General Assembly on 27-28 March and at TEDDY Network (European Network of Excellence for Paeditric Clinical Research) General Assembly on 29 of March in Madrid.

Our guest of the meeting was Dr Valentina Semanaj, Biologist at University Hospital Center ‘Mother Teresa’ who held a lecture on Transplant and HLA System.

A new member joined our group, so the Nensi’s presentation was very helpful also for him as it was a summary of KIDS Albania activities, training plan, mission and expectations.

KIDS designed as well the poster regarding the activities of KIDS Albania during 2018-2019 that will be presented during the 2019 iCAN Research & Advocacy Summit in Missouri.

We invited on our 15th meeting Dr. Fatos Olldashi neurosurgeon at University Hospital of Trauma and lecturer of Neurosurgery in University of Medicine, Tirana. He held a very fruitful and interesant lesson on Cerebral Palsy and Botulinum Toxin explaining what is Cerebral palsy, what causes it, treatment, and some examples. Then our KIDS had an open discussion with Dr.Olldashi.

In the second part of the meeting, we all together revised the documents regarding a study on cerebral study. We analysed Patient Information Sheet for patients under 12 and 16 years old, Patient diary and gave our opinion regarding the content and format.

KIDS Albania had the first meeting after summer vacations on 13 september 2019 at the Faculty of Technical Medical Sciences.

As the 15^th September is the World Lymphoma Awareness Day this meeting was dedicated to this disease, we had a presentation on What Lymphoma is, types of lymphoma, symptoms, diagnostication and treatment.

KIDS Albania is part of #wecare_ye a project coordinated by Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) with the aim to create four new Young Persons Advisory Groups (YPAGs) in Romania, Czech Republic, Greece and Belgium. On 8-18 July in Bari were organized a youth exchange where some members of KIDS Albania and KIDS Bari together with the group leaders shared their experiences on how to set up an YPAG. One of the main activities of youth exchange were the campaign for Lymphoma Awareness Day, they all together worked and created a website, slogan and a symbol giving different suggestions.

Members of KIDS Albania described in the 16^th meeting what they have done during youth exchange and the presentation for the campaign.

The 17^th meeting of KIDS Albania took place on CVBF Albania office.

As November is the Diabetes Awareness Month, Dr. Manika KREKA held a presentation on Diabetes Mellitus Type 1 explaining:

What is Type 1 Diabetes;

Pathophysiology of Diabetes;

Incidence and Prevalence in Europe and Albania;

What are the signs;

Diagnosis;

How is the Type1 Diabetes treated;

How to help our friends with diabetes.

During this meeting a new member joined KIDS Albania!