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

Category: Others

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See also: Clinical Trial

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
Purpose Patients Evaluations Perceived Effectiveness
ALS (Amyotrophic Lateral Sclerosis) 39 104
Participate in clinical trial 17 21
Increase effect of another treatment 2 14
Arthritis pain in shoulder joints 1 0

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 4
Moderate 4
Mild 29
None 73

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

Side effect Patients
Nausea 3
Heartburn 2
Insomnia 2
Neutropenia (low neutrophils) 2
Oily facial skin 2
Abdominal cramps 1

Show all 20 reported side effects

Dosages

Based on patients currently using ALS Phase 3 Study Dexpramipexole (KNS-760704)

Dosage Patients
2 daily 1
300 mg daily 1

Why patients stopped taking ALS Phase 3 Study Dexpramipexole (KNS-760704)

Multiple reasons could be selected

Reason Patients
Course of treatment ended 13
Other 10
Did not seem to work 4
Side effects too severe 3
Doctor's advice 2
Personal research 1
See all 25 patients who’ve stopped using ALS Phase 3 Study Dexpramipexole (KNS-760704)

Duration

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

Duration Patients
5 - 10 years 2

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

Duration Patients
Less than 1 month 1
6 months - 1 year 3
1 - 2 years 20
2 - 5 years 1
Adherence
Adherence Evaluations
Always 105
Usually 4
Sometimes 0
Never taken as prescribed 1
Burden
Burden Evaluations
Very hard to take 0
Somewhat hard to take 2
A little hard to take 13
Not at all hard to take 95
Cost per month
Cost per month Evaluations
$200+ 0
$100-199 1
$50-99 1
$25-49 2
< $25 90
Not specified 16
Last updated:

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

37 members have decided to share their profiles only with other members of PatientsLikeMe.

AustinMJ
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AustinMJ
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: mild
Chest: none
Legs: none
I am: g
I have:
ALS

See AustinMJ's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Jan 16, 2013 (Started Aug 24, 2011)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg Daily
Cost: < $25 monthly

Nov 26, 2012 (Started Aug 24, 2011)

  • Effectiveness
    Major (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 300 mg Daily
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

  • 0 helpful marks
fki2001
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fki2001
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: severe
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See fki2001's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Oct 11, 2012 (Started Jun 16, 2011)

  • Effectiveness
    Can’t tell (for Participate in clinical trial)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 300 mg Daily
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.

  • 0 helpful marks
Root10996
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Root10996
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: severe
Chest: none
Legs: severe
I have:
ALS

See Root10996's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Oct 10, 2012 (Started Sep 10, 2011)

  • Effectiveness
    Can’t tell (for Participate in clinical trial)
  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 2 Daily

  • 0 helpful marks
Last updated:
Showing 3 of 6 patient evaluations for ALS Phase 3 Study Dexpramipexole (KNS-760704)