who is completing this survey
Person living with MSA	318
Caregiver/loved one of an individual currently living with MSA	388
Caregiver/loved one of an individual lost to MSA	123

Background Information:

In which country/region does/did the individual reside? 829 responses

Region	responses
Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont	39
Region II: New Jersey, New York, Puerto Rico, Virgin Islands	40
Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia	50
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee	106
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin	98
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas	76
Region VII: Iowa, Kansas, Missouri, Nebraska	31
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming	14
Region IX: Arizona, California, Hawaii, Nevada (American Samoa, Guam, Northern Mariana Islands, Trust Territory of the Pacific Islands)	53
Region X: Alaska, Idaho, Oregon, Washington	48
Region XI: Canada	38
Region XII: Central America	2
Region XIII: Asia	15
Region XIV: Africa	13
Region XV: South America	1
Region XVI: Antarctica	1
Region XVII: Europe	86
Region XVIII: Australia (continent), New Zealand	72
Region XVIII: Australia (continent)	30
Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermon	16

What is/was the individual’s gender? 829 responses

Gender	Responses
male	486
female	343

Diagnosis Data:

At what age was the individual diagnosed with MSA? 829 responses

Age at diagnosis	Responses
20-25	0
26-30	1
31-35	3
36-40	11
41-45	28
46-50	75
51-55	158
56-60	179
61-65	180
66-70	106
71-75	63
76-80	16
80 or older	9

With which type of MSA was the individual diagnosed? 829 responses

Type of multiple system atrophy	resonses
MSAc	364
MSAp	237
uncertain	228

How long did it take for the individual to secure a Probable/likely diagnosis of MSA? 823 responses

Time to secure Probable/likely MSA diagnosis	responses
0-6 months	98
6-12 months	129
12-18 months	137
18-24 months	110
24 or more months	349

How many neurologists did the individual consult during the diagnosis process? 826 responses

number of neurologists	responses
1	116
2	264
3	244
4	122
5 or more	77
I have not been seen by a neurologist	3

Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA? 820 responses

other diagnosis	responses
no	231
yes	589

At what age did the individual first notice symptoms, later attributed to MSA? 824 responses

age at first Symptoms	responses
20-25	3
26-30	4
31-35	9
36-40	25
41-45	62
46-50	135
51-55	174
56-60	187
61-65	130
66-70	65
71-75	23
76-80	5
80 or older	2

Please indicate events which cause/caused the individual’s MSA symptoms to worsen? 798 responses

Are/Were any cycles observed with regard to periods of worsening of the individual’s symptoms? 774 responsesn

yes/no	Respondents
no	500
yes	274

If cycles are/were observed with regard to worsening of the individual’s symptoms, on average, what was the frequency of the cycles? 319

Frequency	Respondents
approximately twice a week	76
approximately once a week	67
approximately twice a month	47
approximately once a month	66
less frequently than once a month	63

If cycles are/were observed with regard to worsening of the individual’s symptoms, what was the duration of the cycle? 307

Duration	Respondents
less than 6 hours	44
6-12 hours	38
13-18 hours	8
19-24 hours	15
one to two days	81
more than two full days	121

Are/Were there any strategies/interventions that help(ed) reduce the individual’s symptoms? 710 responses

yes/no	respondents
no	313
yes	397

If yes, what are/were the strategies/interventions that help(ed) reduce the individual’s symptoms? 420 responses

Strategy/intervention	respondents
Diet	144
Exercise/Physical Activity	246
Physical Therapy/ Movement Therapy	260
Accupuncture	27
Light Therapy	14
Speech Therapy	172
Supplements (please describe below)	71
Socialization	129
Games, Puzzles, etc.	75

Neurological Care:

On average, what is/was the frequency of the individual’s neurological care? 814 responses

frequency	respondents
less than once a year	61
once a year	69
twice a year	236
three or more times a year	391
no neurological care since diagnosis	57

Has/Had the individual participated in clinical research regarding MSA? 810 responses

yes/no	respondents
no	717
yes	93

In the past/last year, how would you describe the rate of progression of the individual’s MSA illness? 793 responses

Rate of progression	respondents
(1) very few signs of any progression in the past/last year	21
(2) some subtle signs of progression in the past/last year	77
(3) definite signs of progression in the past/last year	389
(4) rapid progression in the past/last year	306

Living Conditions:

Does/Did the individual receive adequate support to live comfortably? 775 responses

yes/no	respondents
yes	695
no	80

If the individual was lost to MSA, how long after MSA diagnosis did he/she live? 133 responses

one year	5
two years	13
three years	33
four years	17
five years	14
six years	6
seven years	5
eight years	5
nine years	7
ten years	7
Still living	2
9 months	2

If the individual was lost to MSA, please indicate the cause of death: 123

If the individual was lost to MSA, what was his/her age at the time of death? 131 responses

Age at time of death	respondents
20-25	0
26-30	0
31-35	3
36-40	1
41-45	0
46-50	4
51-55	7
56-60	19
61-65	36
66-70	30
71-75	22
76-80	6
81-85	1
86-90	1
90 or older	1

Has/Had the individual made arrangements to donate his/her brain to an agency for Research? 654 response

yes/no	respondents
No	525
Yes	129

Does/Did the individual with MSA support a “patient’s right to die?” 719 responses

yes/no	respondents
no	72
yes	420
uncertain/undecided	227

End of Survey #1

_______________________________________________________________________

PLEASE NOTE: start Survey #2

dataMSA Survey Representing Individuals Lost to MSA

The purpose of this survey is to collect data and information regarding individuals lost to Multiple System Atrophy (MSA), as reported by caregivers, family members and loved ones.

The data collected through this survey was made available, at no cost, to groups, agencies and medical personnel that provide treatment, education and research for MSA.

In which country/region does/did the individual reside for most of his/her life? 151 responses

Region	Respondents
Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont	3
Region II: New Jersey, New York, Puerto Rico, Virgin Islands	6
Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia	12
Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee	20
Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin	19
Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas	9
Region VII: Iowa, Kansas, Missouri, Nebraska	7
Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming	2
Region IX: Arizona, California, Hawaii, Nevada (American Samoa, Guam, Northern Mariana Islands, Trust Territory of the Pacific Islands)	11
Region X: Alaska, Idaho, Oregon, Washington	2
Region XI: Canada	11
Region XII: Central America	1
Region XIII: Asia	2
Region XIV: Africa	2
Region XV: South America	2
Region XVI: Antarctica	0
Region XVII: Europe	31
Region XVIII: Australia (continent), New Zealand	11

What was the individual’s gender? 158 responses

Gender	Respondents
male	96
female	62

With which type of MSA was the individual diagnosed? 157 responses

Type of MSA	Respondents
MSAc	53
MSAp	47
uncertain	57

What was the age of the individual at the time of his/her death? 157 responses

Age at Death	Respondents
40 or younger	0
41-45	1
46-50	5
51-55	12
56-60	23
61-65	41
66-70	34
71-75	24
76-80	12
older than 80	5

After receiving diagnosis of Multiple System Atrophy, approximately how long did the he/she live? 156

Years	Responses
less than 1 year	9
1 year	10
2 years	38
3 years	25
4 years	19
5 years	20
6 years	9
7 years	11
8 years	4
9 years	6
10 or more years	5

If he/she MSA  was covered by private or government-sponsored insurance, please state the level of satisfaction with regards to MSA-related care: 114

Satisfaction	Respondents
Very satisfied	20
Satisfied overall	53
Dissatisfied overall	28
Very dissatisfied	13