WP08: Teaching and Dissemination
Pratibha Singhi, MD
PGIMER; Chandigarh, India
Teaching and training with regard to diagnosis and treatment of NCL disorders addressing
(a) experts in NCL diseases – to maintain best clinical practice
(b) non-expert physicians - to increase awareness of these diseases.
(c) other medical professionals (lab technicians, nurses and other health care providers)
(d) parents, family members, and caregivers of patients
Dissemination of scientific results obtained during the project
Dissemination of diagnostic algorithm for NCL disorders
Since the DEM-CHILD grant application in 2011, the number of known NCL genes has increased from eight to at least thirteen (Warrier V et al. BBA 2013). Thus, the already existing agreed-upon diagnostic algorithm had to be changed accordingly and updated. A DEM-CHILD diagnostic algorithm for NCL diseases had been developed in collaboration with all NCL clinical experts in the consortium and published as part of a review on clinical presentation of NCL diseases (Schulz A. et al, BBA 2013).
Six DEM-CHILD teaching workshops focussing on this diagnostic algorithm have been organised during the entire project period (Table 5 and below).
Handouts to medical professionals
A flyer illustrating both, this diagnostic algorithm for NCL diseases as well as providing information where to send diagnostic samples, has been designed and distributed not only during the respective DEM-CHILD teaching seminaries but also at various international congresses (see list of dissemination activities). The flyer can also be downloaded for free from the DEM-CHILD website.
A project website has been created and can be accessed under http://www.dem-child.eu. The website provides information regarding the new diagnostic algorithm (handout can be downloaded for free), as well as information regarding addresses, contact persons, institutions to where and under which conditions diagnostic samples should be sent in the specific country.
A teaching video on NCL has been created with the support of the German NCL Family Association. For this purpose, German NCL patients gave permission to be recorded during neurologic exams, EEG, MRI etc. when they visited the NCL clinic at the University Medical Center Hamburg-Eppendorf, Germany (partner 01). The video has already been given to NCL families at the Annual Meeting of the German NCL Parents Association in September 2012. Once translated, it will be distributed during the project’s next diagnostic workshops (see above) and can also be ordered for free via the project’s website.
Teaching of performance and evaluation of diagnostic procedures
As mentioned above, a total of six DEM-CHILD teaching workshops have been organised during entire project. In order to keep travel costs low for participants, most workshops have been organised before /after or as part of international conference (Table 5).
During these workshops, not only the diagnostic algorithm but also performance and evaluation of diagnostic procedures such as electroretinogram (ERG), electroencephalogram (EEG), light microscopy of blood smears (LM), electron microscopy (EM), and cMRI have been taught by the respective specialists. Each workshop has been attended by approximately 80-100 participants such as paediatricians, child neurologists, adult neurologists, care givers, lab technicians etc.
Table 5: List of DEM-CHILD Teaching Workshops during project period
Dissemination of current research in NCL
Dedicated to consortium
Dissemination of current results of the different work packages of the consortium was performed during 6-monthly Steering Committee and annual General Assembly Meetings (refer to WP09). During these meetings, each WP leader gave a detailed presentation of the current research in the respective work package. Moreover, during General Assembly meetings, young scientists gave presentations of their projects and discussed them with the consortium. Each WP presentation from these meetings is available at :milliarium, a web based tool for FP7 project management provided by GABO:mi. By using :millarium, members of the consortium can access all WP presentations, access the minutes summarizing main results from each DEM-CHILD meeting and update their milestone list.
Dedicated to interested groups outside the consortium
Members of the consortium have given several talks and presented posters about the DEM-CHILD project to NCL experts as well as non-expert child neurologists, geneticists, other clinicians and scientists across the world in various cities including those in the UK, Italy, Germany, India, Finland, Ireland, and USA. Over 2000 international professionals have participated in these conferences. One recent dissemination highlight has been the 14th International Conference on Neuronal Ceroid Lipofuscinoses and Patient Organisation Meeting in Cordoba, Argentina, in October 2014. During this international meeting, members of the DEM-CHILD consortium have disseminated results from their respective work package in a total of ten talks and 5 poster presentations. For a detailed list of DEM-CHILD posters and presentation during scientific meetings, please refer to the dissemination list in ECAS.
Dedicated to the general public
NCL family associations
Throughout the entire project period, the DEM-CHILD consortium has closely collaborated with the national NCL family associations in the participating countries: Clinical experts have given talks at the annual meeting of the Italian, German, Finnish and UK family associations meetings. Moreover, they have provided written reports on the DEM-CHILD work to the NCL family community to be published yearly in the national family associations’ information journal which is sent out to all NCL families in the respective country.
Several interviews with public newspapers as well as during TV-shows have been performed by various DEM-CHILD partners. For a detailed list of DEM-CHILD dissemination activities to the general public, please refer to the dissemination list in ECAS.
In WP8, a NCL diagnostic algorithm has been developed, published and disseminated during various DEM-CHILD teaching seminars including in India. Results of current research of the project have been distributed via workshops, conferences, publications and articles. The dissemination activities reached different target groups such as clinicians, scientists, and patient’s families.