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Master research internship at Genetics and Health Psychology

Universitair Medisch Centrum Groningen

Bedrijf Universitair Medisch Centrum Groningen Type Stage- en onderzoeksplaatsen Locatie Groningen Branche / Vakgebied Studenten Vereiste taal Engels, Nederlands Website https://oorno.nl/ziekenhuis/umcg/

Omschrijving

Research internship: Evaluating patients' perspectives of written information on chromosomal disorders

Background

Approximately one in 200 individuals is born with a rare chromosome disorder globally. Because each one of these disorders is unique, their clinical consequences are not always known. This lack of knowledge can lead to feelings of insecurity from parents about the future of their children, and they often turn to the internet in search for information. In order to support families of affected individuals, Unique, an international non-profit organization, provides information on the expected clinical consequences of rare genetic aberrations via online brochures. Similarly, the Chromosome 6 Project, based at the UMCG, aims to gain more knowledge on the clinical effects of chromosome 6 aberrations and provide this information to patients and families via an interactive webpage. However, there has been no scientific proof thus far that parents benefit from information available online, and funding providers have questioned whether detailed information on the internet is really beneficial for parents. In order to prove that parents do benefit from information

provided online, the Chromosome 6 Project has been collaborating with Unique to evaluate the effect of the information in Unique's online brochures on parents. Our research question is: To what extent is online information about rare chromosome disorders associated with parental anxiety, self- confidence and feelings of control?

What we are looking for

A medical student with an interest in rare chromosome disorders and the use of Internet for patient empowerment, who wants to dedicate their Master thesis on this topic. A basic understanding of statistical tests is required.

What we offer

Supervision by a team of enthusiastic researchers within the Chromosome 6 Project.

Both remote and in-person work is possible. Start date as soon as possible.

If you are interested or want to know more about the research project, please send an email at:

Contact persons: Prof. dr. Conny van Ravenswaaij, Aafke Engwerda, Eleana Rraku

E-mail address:

Departments: Genetics and Health Psychology, UMCG

Internship is corona-proof: Yes

Length: 6 months

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