Vervolg OCOMEN

Eindelijk is het zover! Er kan een volgende stap in het OCOMEN-project gemaakt worden. We nodigen je uit om mee te helpen met het vervolgonderzoek.

Nu we weten wat we moeten meten, is de volgende stap uit te zoeken hoe we dit kunnen meten. Omdat er op dit moment geen meetinstrument is voor de kwaliteit van leven (QOL) voor mensen met CMN, willen we testen welke vragenlijsten goed zijn voor het meten van de kwaliteit van leven voor CMN.
Wil je hieraan meewerken of wil je meer informatie hebben, neem dan contact op met Nienke den Hartog: n.denhertog@amsterdamumc.nl. Nienke den Hartog is onderzoeker bij het Amsterdam Universitair Medisch Centrum.

Dear all,

We are happy to inform you about the next step of the Outcomes for Congenital Melanocytic Naevi (OCOMEN) project. This project aims to develop a Core Outcome Set (COS) for Congenital Melanocytic Naevi (CMN), both in care and research. We value your expertise and would like to invite you to participate in this important project.

A COS is a standardized collection of outcomes that should be measured and reported in all care and research related to a specific health condition. The development of a COS is a critical step in ensuring that future care and research is consistent enabling comparison and combination of data. Together with health care professionals, researchers, people with CMN and their caregivers, we reached consensus on what to measure (core outcome domains).

Now that we know what to measure, the next step is to find out how to measure (core measurement instruments; for example: questionnaires, rating systems, objective devices). As there currently is no measurement instrument for quality of life (QOL) that is validated for people with CMN, we plan to test the content validity of different questionnaires for QOL. Content validity evaluates the extent to which an instrument measures all relevant aspects of the outcome. We invite you to share with us the questionnaire for QOL you believe should be examined on content validity. In a later stage, we will welcome you to participate in a consensus meeting to discuss which questionnaire should be included in the COS.

If you are interested in participating in the OCOMEN project or would like to have more information, please feel free to contact us. We look forward to collaborating with you.

Sincerely,

The OCOMEN Project Management Team,

Suzanne Pasmans, MD, PhD, Professor of Pediatric Dermatology, Erasmus MC
Albert Wolkerstorfer, MD, PhD, dermatologist, Amsterdam UMC
Mieke Pleumeekers, MD, PhD, plastic surgeon, Erasmus MC
Anne Fledderus, MD, PhD, dermatology resident, Maastricht UMC
Nienke den Hertog, MD, research physician, Amsterdam UMC
Marjolein van Kessel, patient representative, Naevus global

Drs. Nienke den Hertog, arts-onderzoeker dermatologie
Amsterdam UMC | Universiteit van Amsterdam

Afdeling Dermatologie
Locatie AMC | A0-223 | Meibergdreef 9, 1105 AZ Amsterdam
E: n.denhertog@amsterdamumc.nl