Category Archives: Polls

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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Results of the Regression Survey

About the Survey

This survey was undertaken to determine the perceptions of parents or caregivers regarding regression in individuals with MECP2 Duplication Syndrome. The purpose of the study was to supplement the information provided in the study by Peters and colleagues in 2013. It differed from the published study in several important respects. Continue reading

Survey on Regression

checkboxIf you are a parent or primary caregiver of a child or adult with MECP2 Duplication Syndrome who is at least 3 years old, please take a few minutes to fill out this small survey on regression in individuals with MECP2 Duplication Syndrome. Please respond whether or not you have observed regression. Thank you.

Data collection for this survey closed on 30 December 2013. Results will be posted early in 2014.

MECP2 Duplication Syndrome Conference Poll

RETT Syndrome Conference

26 -29 June 2014

Washington, DC, USA

Many families of individuals with MECP2 Duplication Syndrome have received a poll from Pam Albert regarding the possibility of having a MECP2 Duplication Syndrome Conference in conjunction with the Rett Syndrome Conference in June of 2014. If you did not receive this survey and would consider attending such a conference, please fill out the following survey. We need your input to determine if we can make this work.

Please respond to this poll below only if you have not already responded to the poll by e-mail. Continue reading

Results of Pneumonia and Lung Infection Poll: Part 4 Hospital-Acquired Infections and Discussion

This post is a follow up to:

Question 9 asked Has your child/family member with MECP2 Duplication Syndrome ever developed pneumonia ….While in the hospital for another reason?  ….  Continue reading

Results of Pneumonia and Lung Infection Poll: Part 3 Treatment

19 June 2012 Part 1 of this topic addressed the frequency of pneumonia or lung infection episodes among individuals with MECP2 Duplication Syndrome and Part2 addressed the severity of these episodes. Part 3 discusses treatments. Continue reading

Results of Pneumonia and Lung Infection Poll: Part 2 Severity

19 June 2012  Part 1 of this report discussed the number of episodes of pneumonia and lung infections experienced by children and adults with MECP2 Duplication Syndrome. In this part, information is presented on the severity of these infections and the impact on the individual. Continue reading

Results of Pneumonia and Lung Infection Poll: Part 1

18 June 2012 Thank you to all the families to took time to answer a few questions about pneumonia and their family members with MECP2 Duplication Syndrome. This is not a scientific survey and it is not based on a random sample, but rather on families that chose to respond. This could affect the results although the large number of responses in comparison to the relatively small number of known cases suggests that it has some value. In addition, the only demographic data collected was age. This survey does not differentiate between males and females or between individuals with duplications and individuals with triplications. Here are some preliminary results. Continue reading

Pneumonia Survey

18 June 2012 This poll is now closed. Results will be posted shortly. Please take a few minutes to help us collect data on pneumonia and lung infections. It is important that we collect information from on as many individuals with MECP2 Duplication Syndrome as possible.  Please complete one survey for each member of your family who has MECP2 Duplication Syndrome, even if that family member has never had pneumonia. If you know other families who have MECP2 Duplication Syndrome, please let them know about this survey. Thank you.

Family Conference Survey

The 2013 MECP2 Duplication Syndrome Family Conference is currently being planned. This survey is intended for families to provide input on the conference program. It is a short survey with just 10 questions, please take a few minutes to provide some input.Feel free to answer as many questions as you like and ignore some questions if you feel they are not applicable or you have no opinion about them. Continue reading