Category Archives: survey

Genetic Alliance UK -Patient Voice Survey

strThe genetic Alliance UK is currently conducted a survey on “Impact of MECP2 duplication syndrome on patients, families and carers.” If you are a carer or family member, please consider completing this survey.
This survey will close on Sunday 12 June 2016 – if you wish to contribute after this date please email beth.mccleverty@geneticalliance.org.uk

 

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Skin Condition Survey 1: Results

checkboxThis is a summary of the results of part 1 of the Skin Conditions Survey.This survey was based previous statements and concerns raised by family members. It is not intended as scientific research but may be helpful to researchers and clinicians in helping to identify areas to explore.

Surveys were completed for 47 individuals with MECP2 Duplication Syndrome from 10 different countries (2 of the 47 were from unidentified countries). Continue reading

Skin Conditions Survey

questionWe are currently conducting a survey on skin conditions observed in individuals with MECP2 duplication syndrome. Please fill out one survey for each individual with the syndrome. All responses will be treated as confidential information. Most respondents have completed the survey in less than 4 minutes. Thank you.

Results will be posted in approximately 10 days.