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
0

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 Aug 24, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jan 16, 2013 300 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 26, 2012 300 mg Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Nov 26, 2012
Advice & Tips
Been rolled over to open-label for DEX. We hope to have a read-out soon (Dec/Jan) on results. I either have a really slow onset or this drug is really working... maybe both. While I've lost much strength in my right hand, all else is good for the last 2 years. My only negative was an early spike in Liver enzimines...
Cost
< $25 monthly
  • Icon_thumb_off 0 helpful marks
Purpose: Participate in clinical trial (Started Jun 16, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Oct 11, 2012 300 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Date
Oct 11, 2012
Advice & Tips
This was a drug trial, I did'nt know if I had the placibo or the real drug. October 11,2012 the trial ended. They are giving me the real drug while they are analyzing the trial data.
  • Icon_thumb_off 0 helpful marks
Purposes: Participate in clinical trial and ALS (Amyotrophic Lateral Sclerosis) (Started Sep 10, 2011)
Date Dosage Participate in clinical trial Perceived effectiveness ALS (Amyotrophic Lateral Sclerosis) Perceived effectiveness Side Effects Adherence Burden
Oct 10, 2012 2 Daily ?Can't tell ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
  • Icon_thumb_off 0 helpful marks
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