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I samtaler med flere foreninger for albinisme som forskerne har gjort, så kan det se ut som at flere personer med albinisme sliter med dårlig søvn, uten at man vet hva dette skyldes. Dersom mange svarer på spørreskjemaene kan man få ny innsikt og potensielt få kartlagt: Om kultur og geografisk lokasjon kan påvirke søvn. 
Undersøkelsen lanseres i samarbeid med den Nederlandske foreningen for Albinisme. Stipriaan har nylig startet opp prosjektet med 30 deltagere i Nederland, men målet er 1000 deltagere rundt om i verden. Hun ønsker også deltagere fra Norge og spørreskjemaet er blant annet oversatt til engelsk. 

I undersøkelsen er det også en kontrollgruppe, så spørreskjemaet skal i tillegg besvares av en venn eller en bekjent av deg.

Her kan du lese mer om undersøkelsen og hvordan du kan delta:

Together with the Dutch Albinism Association, we recently launched an online survey study at the Netherlands Institute for Neuroscience on how people with albinism sleep. We are not only researching this in the Netherlands, but we are now calling for all English-speaking persons with albinism across the world to participate!

From personal conversations, it appears that some persons with albinism have trouble sleeping. However, we do not yet know how prevalent problematic sleep is among them, as this has never been studied on a large scale. Therefore, the first goal of this study is to identify how many people with albinism sleep well and how many sleep poorly. 

For the poor sleepers, we also investigate what the possible causes are. For example, we know from research in people without albinism that poor sleep is more common in people who are exposed to little daylight, or in people with unpleasant childhood experiences. But we know nothing yet about the possible causes of poor sleep among people with albinism. With this research, we hope to better understand problematic sleep in persons with albinism and reveal targets to improve their sleep in the future.

Get involved and make a difference, because the participation of many persons with albinism from across the world can lead to valuable new insights! If enough people from different countries participate, we can even investigate the potential influence of culture and geographical location.

Who can participate?
All adults (18+) with albinism. Not just the poor sleepers, but also the good sleepers, because, without even realizing it, they have the secret to good sleep which can ultimately help poor sleepers!

How can you participate?
Participation consists of completing several online questionnaires once on the Dutch Sleep Registry, at a time that suits you. These questionnaires have been made accessible to visually impaired people and tested by the core team of the Dutch Albinism Association. Their experiences have been used to further improve the questionnaires.

To participate, use the following link: www.slaapregister.nl/en/albinism. You can then create an account to access the questionnaires.

The control group
To investigate whether and why people with albinism sleep worse than people without albinism, the study includes a so-called matched control group. This consists of people without albinism from the environment of the participant with albinism. This includes partners, friends, and acquaintances- but no blood relatives. Each participant with albinism receives further information on how to invite their matched control participant(s). Inviting control participants is preferred, as it is very valuable to the research, but not mandatory for those who are not in the opportunity to invite anyone. 

Reward
After completing all questionnaires, participants have a chance to win a gift certificate of €25! Of course, this applies to both participants with albinism and those in the control group.

For more information, visit www.slaapregister.nl/en/albinism or email the research team at info@slaapregister.nl