US National Cancer Institute survey for DC patients and carers

Are your needs as a DC patient or carer being met? The US National Cancer Institute is carrying out a worldwide survey of patients and carers looking after someone with dyskeratosis congenital or a related telomere biology disorder.

If you are 18 years or older, please take 20 minutes to fill in the survey, at https://ncidccpssurveys.gov1.qualtrics.com/jfe/form/SV_3NOqvDAY7ZgDRCm

You can also choose to take part in a follow-up interview but this is not essential.

Further information is available at

https://clinicaltrials.gov/ct2/show/NCT04959188?cond=Dyskeratosis+Congenita&draw=2&rank=1

Or you can contact the researchers at  camella.rising@nih.gov

Please also feel free to contact our medical director, Dr Hilary Longhurst (hilary@dcaction.org), if you would like any further advice about the survey.