After months of work and dedication, the redesigned Undiagnosed Diseases Network International (UDNI) website version was launched on early April 2019.
Our goal with this new interactive website is to provide our visitors an easier way to learn about ongoing UDNI research activities on undiagnosed rare diseases.
Amongst the new features the site contains integrated social media buttons for Twitter (Udninternational@UDNIss) to foster improved communication with the researchers involved in this field.
The UDNI Communication Group, leaded the updating of the previous version in order to create a more friendly and appealing one.
A central box shows the UDNI Conferences (from the first one in 2014 in Rome to the most recent in 2019 in New Delhi): each event is correlated to a dedicated agenda and photos of the participants. In particular for the last event presentation (pdf format) of all the speakers have been uploaded.
In the middle of the page three different sections have been dedicated to events, conference and research. Event section includes the most recent actions, recommendations, specific information of working groups from all around the world.
Conference section includes information on upcoming, recent and past event (meeting, congresses, workshops, ect.) on undiagnosed rare diseases in the World.
In Research section, articles and documents on research dedicated to undiagnosed rare diseases are included.
A central box has been dedicated to UDNI Participating Countries, Members and Patients Associations. This box shows a number indicating how much participants are involved in the Network and was developed to offer an immediate and direct information on its increasing number.
By clicking on UDNI Countries a World Map indicates how many countries are actually participating to the UDNI Project. By clicking on Membership, a full list of clinical investigators serving undiagnosed disease patients from all countries and participating to the Network is promptly available. Membership List, is ordered alphabetically by Country name.
Finally in Patients Associations section, the list of patients group included in UDNI Network are listed.
New UDNI website version offer the immediate possibility to apply to the Network through the use of a dedicated section (How To Apply). Once entered in this section it is possible to choose between 2 different application form to be filled: one for clinical investigators and the other for patients applicants.
In both cases, a dedicated form has been developed: in the first case (for clinicians) a full description of the specific goals of the UDNI, the criteria for participation and the conditions for participation are fully described.
In particular to be member of UDNI each applicant as Member should have 5 undiagnosed cases to contribute to the UDNI. Acceptance may be limited to one-year, after which an assessment will be conducted for continuation.
To apply as Patient requirements for Online Application include a referral letter from a primary licensed healthcare provider. This referral letter must include: pertinent medical problems and prior diagnoses; medical records of physical examinations, hospitalizations, pertinent office visits, specialist consultations; laboratory test results; imaging on disks; biopsy slides when available; video of speech, gait, hand movements when impaire.
Once submitted, application are directly sent to UDNI Membership Committee, for evaluation and acceptance.
Within the new version of the website it is possible to download, within a dedicated archive, all number of the UDNI Newsletter and have access to a selection of documents (from grey literature) related to undiagnosed rare diseases.
Last , but not least, a dedicated Patients Area has been developed within the new version of UDNI website; this area is under the Wilhelm Foundation responsibility. In this section Wilhelm Foundation will collect some information (phenotypic, genotypic, picture) from undiagnosed rare patients. For this purpose a dedicated ethics-Informed Assent as well as a UDNI Parental Consent were developed and approved during the 6th Conference of Undiagnosed Diseases Network International (19-21 June 2018, Naples) by all UDNI Board Members and participants. Before adding information on a patient these consents have to be download and signed by the Responsible of patient. Patients must have undergone a specific visit in a dedicated undiagnosed clinical site before being added in the present section.
We hope you find the new website with a fresh look, easy to access information and we also wish to establish this portal as a source of information for those who visits our site.
For any questions, suggestions, feedback or comments, please contact us.
By Marco Salvatore, Gianluca Ferrari and Domenica Taruscio.