EOTTD newsletter September 2022

As an attempt to reach the members of EOTTD and others interested in the field of GTD, the EOTTD board will publish regular updates on upcoming meetings, updates from the working parties and other current events or news, in regular newsletters. If you are interested in a special topic or want to add something in the newsletter, please contact the EOTTD board.

Updates from the working parties

Within the EOTTD, there are four active working parties which meet regularly. Among the topics for the members of the working parties are establishing and updating guidelines and increasing cross-border collaboration and teaching. All working parties met on May 14, 2022, in conjunction with the last EOTTD meeting in Cork, and made one and five-year plans for their continuous work.

1. Clinical working party

Approved of clinical guidelines from last year and discussed new guidelines.

The one-year plan includes:

• Revision of old guidelines
• Continued work on new guidelines including complex molar pregnancies and intra-placental choriocarcinoma and flow diagram for unexplained hCG
• Initiating a research group to look at whether there has been any use of single agent chemo in relapsed cases.

The five-year plan includes:

• Teaching, including cases on website and collaboration with ESGO / ESMO / SGO / IGCS (negotiate open access for non-members) and EURACAN
• Develop the EOTTD website
• Involve remaining European countries: Greece, Austria, Romania, Finland, Switzerland, Estonia, Lativia, Albania, Hungary, Iceland, Bulgaria
• Increase the use of social media
• Encourage young colleagues by a young investigator abstract submission at the next EOTTD meeting

2. Pathology and genetics working party

Continued work on the guidelines on diagnostics of HM.

The one-year plan includes:

• Continuing cross-border MDTs
• Continuing QAs including self-assessment (typical cases/good examples) and teaching (rare cases, new entities, grey zone cases) – typically one per event
• Publishing guidelines on HMs
• Publication of paper on expert pathology in GTD
• Development of the homepage
• Short version for clinicians

The five-year plan includes:

• Guideline on GTN
• Revision of guidelines on HMs
• Teaching cases on the homepage, also on genetics, starting with a clinical history, including cases highlighting pitfalls, e.g. from the MDTs

Photo from the first Pathology/ Genetics party international MDT

3. Biochemistry working party

Discussed harmonization of assays. Examples are matching of 3 serum and urine samples between Dundee, Sheffield and Charing Cross performed in April 2022, UKNEQAS to create pools, microbiology testing and add preservative and distribute to 19 GTD centres, twin studies in EQA in the Netherlands and to pool samples (>5 years old) and group into ranges of hCG.

The one-year plan includes:

• Survey - Increase distribution
• Focus on GTD centres without a response
• Update questions? Which test used?
• Special Issue Publication
• Highlight challenges using clinical cases and include algorithms, need for EQA
• Harmonisation Study

The five-year plan includes:

• Education about limitations of commercial assays and EQA participation to labs in the absence of hCG centralization
• Harmonisation Study
• Alternative hCG assays such as LC-MS/MS - regression curves for all isoforms, Dundee -   Acridinium assay with Mologic being worked up and Charing Cross- DELFIA assay, label from Perkin Elmer

4. Nurses working party

One-year plan includes:

• Engagement activities such as 3-monthly EOTTD teaching sessions led by individual centres on rotation
• ePAQ-GTD PROM
• Validated GTD specific Qol/HNA tool to integrate into routine care
• Supporting nurse-led virtual clinics throughout GTD pathway
• Making online support groups more widely available
• Investigating Ireland patients accessing GTD support

Five-year plan includes:

• Achieving best practice nursing guidelines in the EOTTD group
• Challenging of different service configurations –nursing access to support GTD patients
• Reflective sessions to improve HCP well being
• Ensuring every EOTTD meeting has patient voice
• Developing video, direct feedback, blog, social media
• Research active EOTTD nursing group
• Embedding GTD PROM into routine practice for research and service development
• Mutual support and development of ideas and research projects

  Summary of activities within the nursing group working party

Meetings

The EOTTD hosts yearly meetings including one day of lectures and one day of meetings of the working parties. The location is a European city, and this year the 10 ^th EOTTD meeting was held in Cork, Ireland on May 13-14. The arrangements were made by John Coulter and colleagues in Cork in cooperation with Grzegorz Szewczyk and colleagues in Warsaw, Poland. The on-site meeting was a success, attracting colleagues from many European countries for two days of clinical education and working parties, and a wonderful evening party at the Cork Tennis Club.

Participants of the 10 ^th EOTTD meeting in Cork

The GTD team at Weston Park Hospital in Sheffield, U.K, hosted a GTD Bollywood ball on June 11, 2022, to raise funds for Jean’s Research Trust to support the work of Weston Park Hospital in improving care and treatment of patients with GTD as well as to raise awareness of GTD. This year the ball was attended by 18 previously treated patients and their families and raised £11,492. The key speaker was a former GTD patient.

The Sheffield team at the Bollywood ball

Upcoming meetings:

2022       ISSTD XXI World Congress on Gestational Trophoblastic
               October 19-22, Sydney, Australia

2023       11 ^th EOTTD meeting May 12-13, Warsaw, Poland

2024       12 ^th EOTTD meeting Stockholm, Sweden

Teaching sessions

As a part of an outreach program to facilitate the establishment of new GTD centres, the board members of the EOTTD hold teaching sessions in hospitals which have expressed an interest in improving care of GTD patients.

Upcoming teaching sessions

• Stockholm, Sweden – September 16, 2022
• Belgrade, Serbia - 2023?

EOTTD Traineeship (a visiting scholar and mentorship program)

The EOTTD aims at improving the management for patients with GTD in all European countries. This goal is accomplished through a variety of activities. Since there are differences in the development of centres dedicated to the treatment of GTD within Europe, EOTTD wants to introduce a new program providing trainees and early career specialists an opportunity to visit and witness the working of more established units so they may identify improved resource utilization in their own setting.

In this way EOTTD is creating opportunities for trainees/early career professionals to visit more established centres with specific goals of seeking mentorship.

Topics that can be learned in this program:

• Multidisciplinary team management and governance
• The diagnostic process in GTD
• Research and clinical trial design
• Proper hCG management
• Treatment of high and ultrahigh risk patients Pathology and Genetics in GTD

The duration of the traineeship is 1-2 weeks, and the maximum number of yearly positions is four. Centres that can be visited are London, Sheffield, Amsterdam/Nijmegen, Lyon and Stockholm. EOTTD will give financial support to every approved traineeship with 500 euros. The applicant should present his/her resume and the goal(s) of the proposed visit to the EOTTD board as part of the application process.

EOTTD publications

• Formalised consensus of the European Organisation for Treatment of Trophoblastic Diseases on management of gestational trophoblastic diseases.
  Bolze PA, Attia J, Massardier J, Seckl MJ, Massuger L, van Trommel N, Niemann I, Hajri T, Schott AM, Golfier F; EOTTD group.
  Eur J Cancer. 2015 Sep;51(13):1725-31. doi: 10.1016/j.ejca.2015.05.026. Epub 2015 Jun 16. PMID: 26092638
• Is there uniformity in definitions and treatment of gestational trophoblastic disease in Europe?
  Frijstein MM, Lok CAR, Coulter J, van Trommel NE, Ten Kate-Booij MJ, Golfier F, Seckl MJ, Massuger LFAG.
  Int J Gynecol Cancer. 2019 Jan;29(1):108-112. doi: 10.1136/ijgc-2018-000028.
  PMID: 30640691
• Practical clinical guidelines of the EOTTD for treatment and referral of gestational trophoblastic disease.
  Lok C, van Trommel N, Massuger L, Golfier F, Seckl M; Clinical Working Party of the EOTTD.
  Eur J Cancer. 2020 May;130:228-240. doi: 10.1016/j.ejca.2020.02.011. Epub 2020 Apr 1.
  PMID: 32247260

Upcoming EOTTD publications:

Special issue in Gynecology and Obstetrics in 2023
Planned chapters:

1. Editorial
2. The development of hcg testing and the need for reference laboratories.
3. Expert pathology for GTD: towards a international multidisciplinary MDT.
4. Exposure and centralization of GTD care: the elephant in the room.
5. Immunotherapy for GTN: why and when it works.
6. Consequences of GTD treatment for patients
7. Surgical treatment of GTD
8. From national to international collaboration in GTD: hurdles and possibilities
9. Why to consult a geneticist in GTD
10. The rare if the rarest: PSTT, ETT, APSN
11. Controversies in GTN (describing the debates)
12. Mismanagement of GTN (10 cases of not well handled GTN)