Statistics

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Statistics

During late 1999 and early 2000 we have attempted to collect a more reliable set of statistics on Myotubular Myopathy patients. The data we have collected represent respondents to a September 1999 mailing and to Family Registration forms submitted to this website. We have recieved a total of 52 responses; 50 of which provided us with age data. (In our overall list of contacts we have in excess of 250 names. However, due to time and resource constraints we haven't been able to make a more widespread canvass for information.)

Below are some presentations of the data we collected.

Age Data
Residency
Medical Problems

Please note the following disclaimer regarding this data...

The presentations shown here are intended to demonstrate the range of outcomes of MTM and to provide some insight as to relative probabilities of these outcomes. These data have not been clinically verified. Furthermore, the sample sizes are small and the analysis cannot be considered statistically valid.

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Medical Problems

The table below details the responses to our questions concening medical problems of MTM patients. Clicking on the title of each column will take you to a graphical representation of that data.

Living Patients		Tracheostomy	Ventilator or bi-pap	Wheelchair bound	scoliosis	liver problems	blood problems	gall stones
Age Range	Number of Patients	Tracheostomy	Ventilator or bi-pap	Wheelchair bound	scoliosis	liver problems	blood problems	gall stones
0-3 years	9	5	6	1	0	1	1	1
4-6	7	4	5	5	2	0	0	1
7-9	8	7	7	7	3	2	1	1
10-13	5	4	4	4	4	0	1	0
13-20	3	1	2	2	2	0	0	0
>20	2	0	0	0	0	0	0	0
Deceased Patitents		Tracheostomy	Ventilator or bi-pap	Wheelchair bound	scoliosis	liver problems	blood problems	gall stones
Age Range	Number of Patients	Tracheostomy	Ventilator or bi-pap	Wheelchair bound	scoliosis	liver problems	blood problems	gall stones
0-3 years	14	3	7	3	0	0	0	0
4-6	2	1	2	2	2	1	0	0

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Copyright � 2000 by the Myotubular Myopathy Resource Group, Inc . Information on this website may be redistributed and copied freely provided that proper attribution is given. This page was last revised on 15 Apr 2000. The Myotubular Myopathy Resource Group, Inc. is a not-for-profit organization under Section 503(c) of the IRS Code.

These World Wide Web pages are published by the Myotubular Myopathy Resource Group, Inc. solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. This discussion draws largely from the sources cited as well as the personal observations of the authors. We are neither doctors nor experts nor do we pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. The authors, contributors and the Myotubular Myopathy Resource Group, Inc. assumes no responsibility for the use of the information, observations or opinions presented herein.