Nadir Hastalıklar ağı: BBMRI-ERIC ve Avrupa Nadir Hastalıklar Organizasyonlarının birbirleri ile ilişkileri (Mora, Marina et al. modifiye edilmiştir).
Nadir hastalıklar alanında gerçekleştirilen biyobanka faaliyetleri klinik ve moleküler araştırmalara katkıları nedeniyle kritik öneme sahiptir. Ülkemizde araştırma biyobankalarının BBMRI-ERIC standartlarında yapılanması, uluslararası kalite kontrol standartlarının uygulanması açısından başlıca gerekliliktir. BBMRI.tr Nadir Hastalıklar Çalışma Grubu tarafından bu alanda gerçekleştirilen biyobanka faaliyetlerinin belirlenmesi amacıyla nadir hastalık biyobankaları veri altyapısının oluşturmasına öncü olabilecek bir anket hazırlanmıştır. Kurumunuzda yer alan biyobanka nezdinde genel bilgileri, örneklem ve yöntem çeşitliliği, kalite yönetimi gibi konu başlıklarını içeren ankete bu linkten ulaşabilirsiniz.
Mora, Marina et al.“The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.” European journal of human genetics : EJHG vol. 23,9 (2015): 1116-23. doi:10.1038/ejhg.2014.272.
In order to increase awareness on biobanks in Turkey and promote IBG-Biobank; a short film is prepared. IBG-Biobank team enjoyed very much introducing their unit during the shooting.
Çocuk Metabolizma Hastalıkları Akademisi’nin her yıl Mart ayında düzenlediği sempozyum serisi, bu yıl pandemi sebeiyle 15-16 Ekim 2021 tarihinde uzaktan erişimli olarak yapılacak.
Bu yılın sempozyumun konusu ‘Çocukluk Çağında Her Yönüyle Mitokondriyal Hastalıklar‘.
Sempozyumda, çocuk sağlığının hemen tüm ana disiplinlerini içeren klinik yaklaşım sunumları yanında, mitokondri ile ilgili ileri düzey genetik, biyokimyasal, omiks ve biyoinformatik çalışmaları içeren sunumlara yer almakta. Mitokondriyal hastalıkların tanısal yaklaşımında özel bir yere sahip olan radyolojik incelemelere de ayrı interaktif bir sunum olarak programda yer verilmiş.
İlgilenen takipçilerimiz;detaylara cmak.org.tr adresinden ulaşabilirler. Kayıtlı kişiler sempozyumu takip edebilecekler; kayıt olmak için bu linki kullanabilirsiniz.
Bilimsel programın ana başlıkları şöyle:
Mitokondri Biyolojisi ve İlişkili Yolaklar
Mitokondriyal Hastalıklarda Çoklu Sistem Tutulumu
Mitokondriyal Hastalıklarda Nörolojik Tutulum
Mitokondriyal Translasyon Bozuklukları
Mitokondriyal Hastalıklarda Omiks ve Fonksiyonel çalışmalar
A functional biobank is highly
dependent on the collaboration of healthcare professionals and
researchers, along with other biobank professionals. However, there
may be some hindering barriers on the involvement of clinicians in
biobank operations; such as lack of awareness, time and financial
constraints, potential difficulties in the communication with
patients and obtaining informed consents. Regarding this, one of the
most effective ways to enhance biobank practices may be increasing
the awareness of current and future healthcare practitioners,
especially clinicians, on biobanking.
With
the aim of raising awareness on biobanking and enhancing biobank
practices in Turkey; IBG-Biobank, BBMRI.tr and Ege Scientific
Research Association (ESRA), which was founded in 1987 and aims to
increase the awareness of medical students on research, planned an
online course for medical students who are the potential future
collaborators of biobanks. The aim of the event was to educate
medical students on biobanks, increase their awareness and measure
this awareness with validated questionnaires from prior research
projects and Eurobarometer surveys.
The
online education was held on April 11-12, 2021. Before the event, a
biobank awareness survey was sent to medical student networks for
pre-evaluation. The major topics on biobanking that were covered on
the first day included “Research
Biobanks: Fundamentals and Roles in Biomedical Research”, “COVID-19
& Biobanks”, “Research Biobank-IT: Data Integration and
Storage”. On the
second day; “Ethical
Legal Societal Issues (ELSI)”,
“International
Biobanking Networks and Biobanking in Turkey” topics
were discussed in detail. More than 100 medical students from all
over Turkey participated in the event. To our delight, the general
feedback of the participants was strongly positive; more than 90% of
the participants stated that they would certainly recommend the
course to their colleagues.
This short biobanking course
that aimed to focus on a particular subject and group shows us that
such targeted training activities have the potential to be successful
in raising awareness on biobanking among healthcare providers. We
believe that for the best outcome, it is highly beneficial to
schedule these activities in concordance with associations and
national bodies, such as medical students’ associations and medical
student research groups.
The news is published in BBMRI-ERIC newsletter https://www.bbmri-eric.eu/news-events/iso-20387biotechnology-biobanking-accreditation-workshop/
The functionality, sustainability and continuous development of biobanks is only possible through the implementation of biobank quality standards. In terms of national and international sample / data transfer and advancement of research in health and life sciences through its contributions to biobanking activities, the implementation of international biobanking standards and technical documents -set up as a result of the long, meticulous work of biobank specialists- have critical significance.
The “ISO 20387: 2018: Biotechnology – Biobanking Accreditation Workshop” was held in Turkey in February under the coordination of the Turkish Accreditation Agency (TÜRKAK) for TÜRKAK’s accreditation specialists, auditors / technical specialists, as well as managers and employees of biobanks in Turkey.
The workshop was conducted online between 16-18 February 2021 within the scope of the IPA-II project “Enhancement of TÜRKAK’s Capacity in the Accreditation of Conformity Assessment Bodies” funded by the European Union (EU) and Turkey, which TÜRKAK is a beneficiary of.
On the first day of the ‘ISO 20387 – Biotechnology– Biobanking’ standards training, speeches were delivered by TÜRKAK Deputy Secretary General Dr. Kürşat Özdemir, BBMRI-ERIC Director Prof. Dr. Jens Habermann, TÜRKAK accreditation specialist Emre Durmuş and BBMRI Turkey Coordinator Prof. Dr. Neşe Atabey, informing participants on TÜRKAK’s training organisations, the BBMRI-ERIC Biobank Consortium and the BBMRI Turkey Biobank Network. Following these speeches, BBMRI Quality Manager Andrea Wutte gave training on the requirements of the ISO 20387 standard and putting these into practice. This was followed by group work on sharing information and expertise among accreditation specialists and biobankers, overcoming existing problems and sharing good practices in biobanking.
This activity contributed greatly to the harmonisation of biobanking quality standards in biobanks in Turkey, as well as accelerating the ISO 20387 accreditation process.
TRT Haber News Channel Interviews Members of IBG-Biobank on Biobanks
Esra Sayın and Ünsel Ayhan Aybek from TRT Haber news channel got together with IBG-Biobank Platform Director and BBMRI-ERIC Turkey representative Prof. Dr. Neşe Atabey, IBG-Biobank Department Manager Dr. Sanem Tercan Avcı and TUBITAK STAR scholarship students to prepare a news report on the importance of biobanks.
The video of the news report was shot at the laboratories of IBG-Biobank. The reporters spoke to Prof. Atabebey, Dr. Tercan Avcı, TUBITAK scholarship students Mustafa Karataş, Melis Çamkıranlar and Ekin Azbazdar about the definition of a biobank, the setting up of IBG-Biobank, the importance of biobanks during the Covid-19 pandemic and the other biobanks in Turkey.
This news piece was published in BBMRI-ERIC newsletter https://www.bbmri-eric.eu/news-events/ibg-biobank-a-bbmri-tr-partner-established-a-covid-19-cohort/
IBG-Biobank, the Biobank and Biomolecular Resources Platform of Izmir Biomedicine and Genome Center (IBG), in partnership with Dokuz Eylul University Hospital (DEUH) and Izmir Tınaztepe Health Group Hospitals has set up a bio-cohort of Covid-19 patients and controls.
Establishment of the cohorts has made IBG-Biobank a centralized resource which transfers, processes, stores, and disseminates the biological specimens and clinical data for the vaccine and drug development studies supported by the Scientific and Technological Research Council of Turkey (TUBITAK), as well as Covid-19 diagnostic kit development projects and research projects designed to understand the mechanisms of disease severity.
As we all witnessed, rapid establishment of these valuable and non-renewable resources has been critical for improving the understanding and management of this life-threatening disease. In the beginning of pandemic; the informative and comprehensive web-conferences -such as the one organized by BBMRI-ERIC Quality Management Team on “Biobanking in times of Covid-19”- have accelerated the start-up process of the cohort; especially in terms of the adaptation of the patient consent forms, the follow-up forms for transferring, collecting, processing and storing the biological samples, as well as the standard operating procedures based on Covid-19 CDC & WHO guidelines. Thanks to the Scientific and Technological Research Council of Turkey (TUBITAK), that started up a Covid-19 fellowship scheme, young researchers could be trained and contribute to the labor-intensive Covid-19 biobanking process.
IBG-Biobank started to collect the COVID-19 biological samples in June. So far; the biological samples of a total of 5136 patients with different disease severity and controls have been archived. Bio-specimen included nasopharyngeal or oropharyngeal swab samples (inactivated samples), serum/plasma, and whole blood.
It has been clear that in the situations like a global pandemia; individual and/or regional solutions are not sufficient, and global health crisises can only be overcomed by scientific awareness, cooperation and coordination. BBMRI-ERIC has made extraordinary efforts to achieve these cooperation and collaborations. As IBG-Biobank and BBMRI.tr partner, we would like to thank everyone involved in BBMRI-ERIC directory, QM-team and communication office for all their comprehensive support and guidance.
Each year, the last day of February is marked as the International Rare Diseases Day. The main aim is to raise awareness amongst the public and decision-makers on the impact of Rare Diseases on the patients, their families and the public.
In Turkey, the number of events and informative meetings organized for this day is increasing more and more each year.
We have put some of these events together in this post. Just note that; they are all on-line so you will have access from anywhere:
1- Hacettepe University Center for Genomics and Rare Diseases (HUGEN) organized an online educational meeting for the Rare Diseases Day that will take place on February 26th 2021 starting at 14:00.
2- There will be an on-line symposium organized by Ankara City Hospital, Ankara Yıldırım Beyazıt University and the University of Health Sciences on February 28th 2021 between 13:15-17:00.
You can use this link to register to the symposium
3- Ministry of Health of Turkey and TUSEB (Health Institutes of Turkey) organized an online symposium to increase the awareness on Rare Diseases that will take place on February 26th Friday between 9:30 and 16:30. You can register the event from this link. Hurry up, the registrations are closing soon.!
4- Rare Diseases and Orphan Drugs Application and Research Center-ACURARE’s event will be held on February 28th between 13:30 and 16:00. Please check the leaflet below for details.
Dr. Sanem Tercan Avci and Prof. Dr. Neşe Atabey from iBG-Biobank and Biomolecular Resources Platform has prepared an article on the importance of biobanks in the pandemic process within the scope of Tübitak Covid-19 web portal Scientific Research Sharing Platform.
