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EBMT 2021 Annual Meeting - Data manager interview: Marianne Helweg

Registry/Data Management

Data manager interview – Marianne Helweg, Germany

2021 marks the 20th anniversary of the creation of EBMT’s Data Management Group Meeting. But who exactly are the ‘data managers’ and what do they do? In the second of our interviews, we meet Marianne Helweg of University Hospital Schleswig-Holstein, Germany.

Q: Hi Marianne! For those delegates who do not know what the role of a data manager is, could you explain your day-to-day work?

A: The specifics may differ depending on size of the unit! Some background on our unit: the BMT program started in 1983, and since then we have transplanted more than 2600 patients (adult and paediatric), with an average (in the last 10 years) of approx. 110 transplants per year (allogeneic and autologous). From the beginning, the head of the unit was involved in EBMT activities and therefore also put a strong emphasis on data collection. This includes follow-ups of patients as long as possible. So, we

  • Routinely check which reports in the PROMISE system are due and enter the data
  • Keep the in-house database up-to-date
  • Deal with requests for additional projects (national and international)
  • Prepare Data Queries for Quality Management Meetings

Q: How did you get into this specialised career?

By chance. When I started working as a study secretary in the university hospital, in the beginning of the 1990s, these careers were just evolving. I have no education background in medicine, but a Master’s degree in the human sciences, and the ability to work independently was sought after. It just developed with new interesting projects all the time, including work in the accreditation process, and in transplant coordination.

Q: How has data management changed in the years you have been in the job?

The sheer amount of data to be collected has multiplied. The MED-A form is continually being expanded, requests to participate in retrospective analyses come in almost every week.

The establishment of the Data Management Group and National Registries have been a necessary antidote to the feeling of getting lost in a rapidly growing society.

Q: What are the biggest challenges of being a data manager?

A: On a day-to-day basis, the challenge is getting hold of the patient files (there are still a lot in paper form), detecting the relevant information, and transferring them to the evaluable format of the database in which the data have to be entered (such as grading systems). This can really be a challenging and tedious task!

On a greater scale, the challenge is keeping track of the various ongoing projects and getting priorities straight. At regular intervals, the need arises to discuss the tasks and responsibilities, and set limits. With the new treatment of CAR-T and other therapies, and the ever-growing requests for detailed data, we now face the challenge to negotiate for more personnel.

And last but not least: we have to keep ourselves updated on new diagnosis methods, classifications and treatments.

Q: And what are some of the most rewarding parts of the role?

For me, there are 3 sources of feedback that make the efforts worthwhile:

  1. Patients with long-term follow-ups (The longest follow-up we have is 35 years). Knowing that patients are alive and well a long time after this treatment can really make my day.
  2. The doctors in our department. We are lucky that the principal investigators and senior physicians in our department value the importance of high quality data. Apart from the EBMT Registry, we have an in-house database (like most centres, I guess!), and these data are analysed by our statistical department on a regular basis. This database is regarded as real “treasure”, and the doctors in our department often turn to the data managers with specific questions (for example, preparative regimens for certain diseases over the last years)
  3. Reports from outside. Our National Registry compiles annual reports that show follow-up completeness and outcome in relation to other German centres. This report is eagerly awaited each year.  I am also happy that the benchmarking project of the EBMT is now underway.

Q: How would you describe the importance of EBMT’s Data Registry?

Both the Registry Database and the Registry Office are indispensable. A reliable data management system is essential, and over time, I have become attuned to the PROMISE database! It is unfortunate that currently the second attempt to implement a new system is on hold, and I feel sorry for the registry staff who must be really frustrated. I am frustrated because this delay means that the proper forms for CAR-T / IEC were not developed in PROMISE, and now we are about to receive more Excel-sheets for data entry (very tedious!).

I would like the Registry staff to become more “visible” for data managers, maybe reports from the registry committee on ongoing projects that will have an impact on the work of data managers.

Q: How important is it to have a defined set of data management sessions in the EBMT Congress?

A: I think the sessions have become vital.  The concept that the Data Management Group sets the agenda and defines the setting is great. The communication among Data Managers improves significantly when they meet over a period of time and not just for one lecture and then move on. I will miss meeting my colleagues in person this year.

Thank you Marianne – and we hope to see you and all our other delegates in person at next year’s EBMT.

Data Manager Marianne Helweg

These Data Management sessions are available in our on-demand library throughout the whole congress:

  • DM05 - Education Session 5: Hematopoietic Cell Transplantation-Comorbidity Index "Sorror Score" - Bronwen Shaw (United States)
  • DM06 - Education Session 6: Response in Multiple Myeloma - Meral Beksac (Turkey)
  • DM07 - Education Session 7: Minimal residual disease (MRD) - Johannes Schetelig (Germany)
  • DM08 - Education Session 8: Infectious complications - Malgorzata Mikulska (Italy)
  • DM09 - Education Session 9: Follow up forms - How to get a chronological overview of the patient history and follow up - Elena Ferrer Martínez del Peral (Spain)