ALS Phase 3 Study Dexpramipexole (KNS-760704) Treatment Report

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What is ALS Phase 3 Study Dexpramipexole (KNS-760704)?

An example of ALS Phase 3 Study Dexpramipexole (KNS-760704)

NCT01281189 is a randomized, double-blind, placebo-controlled, multi-center study of the safety and efficacy of dexpramipexole in subjects with amyotrophic lateral sclerosis (ALS). Dexpramipexole was previously known as KNS-760704. Other study IDs: EMPOWER, 223AS302, EUDRA CT NO:2010-022818-19.

Reported Purpose & Perceived Effectiveness

Reasons and Perceived effectiveness
Perceived Effectiveness
Purpose # of patients # of patients with evaluations
Major
Moderate
Slight
None
Can’t tell
ALS (Amyotrophic Lateral Sclerosis) 38 30 Efficacy_major Efficacy_moderate Efficacy_slight Efficacy_none Efficacy_cant_tell
Participate in clinical trial 17 12 Efficacy_major Efficacy_slight Efficacy_none Efficacy_cant_tell
Increase effect of another treatment 2 0

See all 29 patients currently using ALS Phase 3 Study Dexpramipexole (KNS-760704)

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Reported Side Effects

Side effects as an overall problem

Severe
 1
Moderate
 2
Mild
 9
None
 24

Commonly reported side effects, conditions, and hospitalizations associated with ALS Phase 3 Study Dexpramipexole (KNS-760704)

Nausea 3
Insomnia 2
Heartburn 2
Oily facial skin 2
Neutropenia (low neutrophils) 2
Hospitalization 2
See all 21 reported side effects ▼ See top 6 reported side effects ▲

Reported Schedules

  2 mg daily 2 intl units daily 2 daily 2 other daily 30 mg daily 150 mg daily 300 mg daily
  1 Number of Patients: 1 1 Number of Patients: 1 7 Number of Patients: 7 4 Number of Patients: 4 1 Number of Patients: 1 1 Number of Patients: 1 18 Number of Patients: 18  

Reported Stop Reasons

Why Patients Stopped Using ALS Phase 3 Study Dexpramipexole (KNS-760704) (multiple reasons could be selected)
Reason # Patients Percentage of patients
Course of treatment ended 12   Course of treatment ended: 52%
Other 9   Other: 39%
Did not seem to work 4   Did not seem to work: 17%
Side effects too severe 3   Side effects too severe: 13%
Doctor's advice 2   Doctor's advice: 9%
Personal research 1   Personal research: 4%

See all 23 patients who’ve stopped using ALS Phase 3 Study Dexpramipexole (KNS-760704)

Reported Duration See details about how long patients take this treatment ▼

Currently Using ALS Phase 3 Study Dexpramipexole (KNS-760704)

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0-1 month 1-3 months 3-6 months 6 months-1year 1-2 years 2 years or more
0
0
0
0

Stopped Using ALS Phase 3 Study Dexpramipexole (KNS-760704)

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0-1 month 1-3 months 3-6 months 6 months-1year 1-2 years 2 years or more
0
0
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Reported Adherence, Burden & Cost See details from patient evaluations ▼

Adherence

Taking treatment as prescribed

Adherence of ALS Phase 3 Study Dexpramipexole (KNS-760704)

Always
 34 94%
Usually
 2 6%
Sometimes
 0 0%
Never
 0 0%

Burden

Difficulty being on treatment

Burden of ALS Phase 3 Study Dexpramipexole (KNS-760704)

Very
 0 0%
Somewhat
 0 0%
A little
 7 19%
Not at all
 29 81%

Cost

Paid out of pocket

Cost of ALS Phase 3 Study Dexpramipexole (KNS-760704)

$200+
 0 0%
$100-199
 1 3%
$50-99
 1 3%
$25-49
 0 0%
< $25
 27 93%

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6 patient evaluations for ALS Phase 3 Study Dexpramipexole (KNS-760704)

Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Jul 05, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Mar 26, 2012 300 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jul 20, 2011 300 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
  • Icon_thumb_on 5 helpful marks
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Jun 14, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Sep 07, 2011 2 Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 23, 2011 2 Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 09, 2011 2 Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 14, 2011 2 Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Side effects:
Sleep problems
Date
Sep 07, 2011
Advice & Tips
Struggling to believe this is doing anything for me in terms of slowing progression, if anything its as though its sped up! maybe i'm on the dummy drug.
Cost
< $25 monthly
Date
Aug 09, 2011
Advice & Tips
This may be a result of Dex or may not but since the i started 2 months ago my breath test improved from 86 to 93! either way it gave me a lift.
Cost
< $25 monthly
Date
Jun 14, 2011
Advice & Tips
The only side effects i have noticed is a change in my sleeping and slightly more indegestion
Cost
< $25 monthly
  • Icon_thumb_on 4 helpful marks
Purpose: Participate in clinical trial (Started Sep 09, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jan 31, 2012 300 mg Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
  • Icon_thumb_on 1 helpful mark
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