Multiple successes for urological rare disease network ERN eUROGEN: EC funding will continue activities for 2023-2027
developments”, followed by a presentation by Mr. Rob Cornes (GB) on behalf of the ERN eUROGEN ERN Patient Advocacy Group (ePAG) on “The importance of communication in rare diseases and complex conditions: The patient perspective.” Patient empowerment will be a prominent feature of the next grant and the network already has several exciting activities underway relating to patient awareness and information. This was followed by a presentation relating to each of the ERN’s three workstreams. Dr. Ramon Gorter (NL) and his colleagues gave the Workstream 1 (rare congenital uro-recto-genital anomalies) presentation on “Urogenital problems in rare and complex forms of anorectal malformation: Paediatric surgical, urological, & gynaecological perspectives.” All presenters emphasised the importance of both a multidisciplinary team approach and transition from paediatric to adult services – an important issue, recognised by ERN eUROGEN’s newly formed working group on ‘Transition’. For Workstream 2 (functional urogenital conditions requiring highly specialised surgery), Mariangela Mancini (IT) spoke on “Interstitial cystitis: Current evidence, personal perspectives, ideas for the future”, and stated the diagnosis pathway she feels should be in every urology textbook: history, physical exam, lab tests, abdominal ultrasound, cystoscopy with hydrodistension and biopsy, and urodynamics. Finally, Dr. Arnout Alberts (NL), Dr. Yue Che (DE), and Dr. Peter-Paul Willemse (NL) gave presentations about “Testicular cancer: Collaborative projects” relating to Workstream 3 (rare urogenital tumours), which emphasised the value of expert networks such as ERN eUROGEN.
The worsening humanitarian needs in Ukraine are escalating the plight of special children with special needs, so OMNI-Net recently launched the “Help us help them” initiative to raise funds for these children and provide a glimmer of hope. Proceeds will help children who need catheters and cerebral shunts. See www.gofundme.com/f/help-ukrainian-children- with-disabilities to learn more. ERN eUROGEN will also be supporting visits by Ukrainian doctors to its HCPs under its above mentioned exchange programme and is petitioning the EC to open up the CPMS to Ukraine, even though it is outside the EU/EEA.
Ms. Jennifer Tidman ERN eUROGEN Business Support Manager Nijmegen (NL)
jen.tidman@ radboudumc.nl
ERN eUROGEN (www.eurogen-ern.eu) is the European Reference Network (ERN) for rare urogenital diseases and complex conditions. Its establishment and launch were supported by the EAU which remains an extremely valued supporting partner of the network. Below is an update on the ERN's ongoing activities and recent successes. Referral of patients to ERN eUROGEN We would like to remind EAU members that any clinician in the EU/EEA can refer patients with a rare urogenital disease or a complex condition that falls within the scope of the ERN. Our multidisciplinary team of experts can give secure virtual consultations using the Clinical Patient Management System (CPMS) to diagnose, suggest treatment or surgery, and then provide post-operative and transitional
support. See more: www.eurogen-ern.eu/ what-we-do/virtual-consultations-cpms .
A new, improved, and even easier-to-use CPMS is being developed by IBM and is expected to launch by the end of 2023, with a final version in Summer 2024.
ERN eUROGEN is providing input and recommendations in this process.
Call for EC funding under EU4Health programme The European Commission (EC) has invited ERNs to submit proposals for grants to support their coordination, management and operational activities from September 2023-2027 under the EU4Health work programme. The total budget available to the 24 ERNs is €77,400,000 (i.e., €3,225,000 per ERN) which may even be increased by a maximum of 20%. The ERN eUROGEN coordination team is working hard to submit the proposal and the evaluation results are expected at the end of July/start of August 2023. Under this grant, ERN eUROGEN plans to intensify collaboration with the EAU Patient Office, the EAU Guidelines Office, and the European School of Urology, with further exciting initiatives being co-developed. First five-year evaluation of ERN ERN eUROGEN has successfully submitted its information for the first five-year evaluation of the ERNs in accordance with EC regulations, which mandate that all networks are evaluated at least five years after approval. This includes self-evaluations from all the network’s healthcare provider (HCP) members and the network itself, interviews, documentation review, and onsite and virtual audits. This is all evaluated by an Independent Evaluation Body (IEB) to compare activities and progress against original objectives, check outcomes and performance, and the contribution of each member. "Patient empowerment will be a prominent feature of the next grant and the network already has several exciting activities underway relating to patient awareness and information." The EC expects the evaluation to take approximately one year. The IEB is now preparing the draft evaluation reports for each member, which will include the summary and detailed results, as well as comments and recommendations. The final results will be published on the EC’s website for public health. EAU23 Congress: Thematic Session ERN eUROGEN held a very successful and well- attended Thematic Session on rare and complex urology at EAU23 in Milan, on 13 March 2023.
Involvement in EAU Guidelines ERN eUROGEN clinical experts and ePAG representatives have been involved in a
Ms. Michelle Battye, Mr. Rob Cornes, Dr. Ramon Gorter and Dr. Mariangela Mancini (clockwise) presenting in the Thematic Session on rare and complex urology at EAU23
multidisciplinary panel, coordinated by the EAU and the American Society of Clinical Oncology (ASCO), which has just released new international collaborative guidelines on the management of penile cancer. We are very proud of their contribution to this important work. ERN eUROGEN and ERN ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) are currently working with the EAU Paediatric Guidelines Panel on guidelines for the management of neurogenic bladder in spinal dysraphism. ERN eUROGEN will also be working with the EAU Female LUTS Guidelines Panel on guidelines for vesicovaginal fistulae.
2 0 2 3 BALTIC23 8th Baltic Meeting in conjunction with the EAU 26-27 May 2023, Riga, Latvia www.baltic23.org
Other ERN eUROGEN successes ERN eUROGEN aims to share and spread
information, knowledge, and best practice, and foster developments that improve care within and outside the network. One way of achieving this has been through the EC’s ERN Exchange Programme, which closed on 31 January 2023. At the evaluation meeting, ERN eUROGEN discovered that despite being one of the smaller ERNs, with 33 five-day packages initially allocated, it had performed best out of all 24 networks, delivering 82 packages. Positive evaluations have been received from everyone who took part. ERN eUROGEN would like to thank all its visitors and hosts for their enthusiasm and dedication. We have launched a new, self-run and self-funded exchange programme, which is open to our network members, and we will continue this under the next grant. ERN eUROGEN is producing a book “Rare and complex urology” , published by Elsevier, with overview chapters on network development and activities such as collaboration, guidelines, and our patient registry, followed by clinical chapters on each expertise area we cover. Each clinical chapter will be authored by experts from at least three HCPs within Europe to ensure quality and consensus. Work is progressing well, and the book will be published in early 2024. Support for Ukraine ERN eUROGEN is collaborating with the International Federation for Spina Bifida and Hydrocephalus (IFSBH) and has signed a Memorandum of Understanding with ONMI-Net Ukraine (a network of over 20 children’s hospitals in Ukraine) to help children with rare disorders and their families.
An application has been made to the EACCME ® for CME accreditation of this event
Ms. Michelle Battye (GB), ERN eUROGEN programme manager, delivered an “Update on ERN eUROGEN
European Urology Today
April/May 2023
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