Trial Outcomes & Findings for CJD (Creutzfeldt-Jakob Disease) Quinacrine Study (NCT NCT00183092)

NCT ID: NCT00183092

Last Updated: 2014-06-09

Results Overview

Participants alive after 2 months on study treatment

Recruitment status

COMPLETED

Study phase

PHASE2

Target enrollment

69 participants

Primary outcome timeframe

Randomization to Month-2

Results posted on

2014-06-09

Participant Flow

Enrollment began in April 2005 and ended in January 2009. Subjects came from across the USA, as well as Canada, with a plurality from California, and enrolled at one U.S. clinical site (University of California, San Francisco).

425 patients referred; 69 subjects consented/enrolled; 54 subjects eligible/randomized; 3 randomized subjects identified as carriers of PrP (prion protein) gene mutations as determined by analysis of sequence variability of the bovine prion protein gene (PRNP) and excluded from analyses.

Participant milestones

Participant milestones
Measure
Quinacrine
Double Blind Period: 100mg Quinacrine by mouth three times a day. Open Label Period: Choice of study drug or open-label Quinacrine 100mg by mouth three times a day.
Placebo
Double Blind Period: 100mg Placebo by mouth three times a day. Open Label Period: Choice of study drug or Quinacrine 100mg by mouth three times a day.
Study Drug (Quinacrine) During Open-Label Period
Participants received Quinacrine during Double-Blind period and opted to continue study drug during Open-Label period
Study Drug (Placebo) During Open-Label Period
Participants received Placebo during Double-Blind period and opted to continue study drug during Open-Label period
Double-blind (Baseline - Month 2)
STARTED
23
28
0
0
Double-blind (Baseline - Month 2)
Alive at Month 2
13
19
0
0
Double-blind (Baseline - Month 2)
Came in for Month 2 Visit
10
16
0
0
Double-blind (Baseline - Month 2)
COMPLETED
11
16
0
0
Double-blind (Baseline - Month 2)
NOT COMPLETED
12
12
0
0
Open-label Period (Month 2 Until Death)
STARTED
10
14
1
1
Open-label Period (Month 2 Until Death)
COMPLETED
0
0
0
0
Open-label Period (Month 2 Until Death)
NOT COMPLETED
10
14
1
1

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

CJD (Creutzfeldt-Jakob Disease) Quinacrine Study

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Placebo
n=28 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=23 Participants
Quinacrine : 100mg by mouth three times a day
Total
n=51 Participants
Total of all reporting groups
Age, Continuous
64.4 years
FULL_RANGE 10.9 • n=5 Participants
60.5 years
FULL_RANGE 8.0 • n=7 Participants
62.5 years
n=5 Participants
Sex: Female, Male
Female
9 Participants
n=5 Participants
11 Participants
n=7 Participants
20 Participants
n=5 Participants
Sex: Female, Male
Male
19 Participants
n=5 Participants
12 Participants
n=7 Participants
31 Participants
n=5 Participants
Region of Enrollment
United States
28 participants
n=5 Participants
23 participants
n=7 Participants
51 participants
n=5 Participants

PRIMARY outcome

Timeframe: Randomization to Month-2

Participants alive after 2 months on study treatment

Outcome measures

Outcome measures
Measure
Placebo
n=28 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=23 Participants
Quinacrine : 100mg by mouth three times a day
Primary Survival
19 participants
13 participants

SECONDARY outcome

Timeframe: Baseline to Month-2

Population: Subjects still alive, who attended the month-2 visit and were willing and able to tolerate cognitive testing. 1 subject in each arm did attend the 2-month visit but did not cooperate fully with the MMSE, which was therefore not scored.

The mini-mental state examination (MMSE) is a brief 30-point questionnaire that is used to screen for cognitive impairment. In about 10 minutes it samples functions including arithmetic, memory and orientation. A score greater than or equal to 25 points (out of 30) indicates a normal cognition. Lower scores can indicate severe (≤9 points), moderate (10-18 points) or mild (19-24 points) cognitive impairment. Low to very low scores correlate closely with the presence of dementia, although other mental disorders can also lead to abnormal findings on MMSE testing.

Outcome measures

Outcome measures
Measure
Placebo
n=15 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=9 Participants
Quinacrine : 100mg by mouth three times a day
Change in Mini-Mental State Examination (MMSE) After 2 Months
-6.9 units on a scale
Interval -18.0 to 4.0
-3.9 units on a scale
Interval -10.0 to 1.0

SECONDARY outcome

Timeframe: baseline, 2 months

Population: One surviving subject in the quinacrine arm did not attend the 2-month visit and was lost-to-followup; for a second surviving subject in the quinacrine arm, the Barthel Index was inadvertently not performed at the 2-month visit.

An ordinal scale used to measure performance in activities of daily living. Scores range from 0 (worst, fully dependent) to 100 (best, independent); higher score associated with a greater likelihood of being able to live at home with a degree of independence following discharge from hospital. 10 individual items are scored and summed to derive the overall Barthel index score. Each item may be scored 0, 5, 10 or 15; not all items use the full range of 4 possible values. The amount of time and physical assistance required to perform each item are considered in scoring each item. For subjects unable to return for month-2 visit, Barthel Index was performed via telephone.

Outcome measures

Outcome measures
Measure
Placebo
n=19 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=11 Participants
Quinacrine : 100mg by mouth three times a day
Barthel Score Change After 2 Months
-23.2 units on a scale
Interval -85.0 to 70.0
-13.2 units on a scale
Interval -65.0 to 5.0

SECONDARY outcome

Timeframe: Baseline, 2 months

Population: For subjects still alive at month 2 and assessed at the 2-month visit or via telephone

Clinical Dementia Rating Scale Sum of Boxes (CDRS-SB). The CDR is obtained through semistructured interviews of patients and informants, and cognitive functioning is rated in 6 domains of functioning: memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care. Each domain is rated on a 5-point scale of functioning: 0, no impairment; 0.5, questionable impairment; 1, mild impairment; 2, moderate impairment; and 3, severe impairment (personal care is scored on a 4-point scale without a 0.5 rating available). The global CDR score is computed via an algorithm. The CDR-SB score is obtained by summing each of the domain box scores, with scores ranging from 0 to 18. A higher value and/or positive change is worse. For subjects unable to return for month-2 visit, CDRS-SB was performed via telephone.

Outcome measures

Outcome measures
Measure
Placebo
n=19 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=12 Participants
Quinacrine : 100mg by mouth three times a day
Change in Clinical Dementia Rating Scale Sum of Boxes (CDRS-SB) After 2 Months
3.2 units on a scale
Interval -1.0 to 8.0
0.3 units on a scale
Interval -1.0 to 2.0

SECONDARY outcome

Timeframe: Baseline, 2 months

Population: For subjects still alive at month 2 and assessed at the 2-month visit or via telephone

The scale runs from 0-6, running from perfect health without symptoms to death. 0 - No symptoms. 1. \- No significant disability. Able to carry out all usual activities, despite some symptoms. 2. \- Slight disability. Able to look after own affairs without assistance, but unable to carry out all previous activities. 3. \- Moderate disability. Requires some help, but able to walk unassisted. 4. \- Moderately severe disability. Unable to attend to own bodily needs without assistance, and unable to walk unassisted. 5. \- Severe disability. Requires constant nursing care and attention, bedridden, incontinent. 6. \- Dead. For subjects unable to return for the 2-month visit, Rankin score was assessed via telephone.

Outcome measures

Outcome measures
Measure
Placebo
n=19 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=12 Participants
Quinacrine : 100mg by mouth three times a day
Change in Rankin Score After 2 Months
0.8 units on a scale
Interval 0.0 to 2.0
0.3 units on a scale
Interval -1.0 to 2.0

SECONDARY outcome

Timeframe: Baseline, 2 months

Population: Subjects still alive and able to tolerate cognitive testing at Month 2 visit.

ADAS-cog measures cognitive performance by combining ratings of 11 components (word recall, word recognition, constructional praxis, orientation, naming objects and fingers, commands, ideational praxis, remembering instruction, spoken language, word finding, comprehension) representing six areas of cognition: memory; language; orientation to time, place and person; construction of simple designs and planning; and performing simple behaviors in pursuit of a basic, predefined goal. Seven components are scored as the 'number incorrect'. For example, in the commands component, the number of five commands performed incorrectly (range: 0-5). Four components are scored from 0 (no limitations) to 5 (max limitations) as the examiner's perception of remembering instructions, spoken language ability, word finding and comprehension. Component scores are summed into a total ADAS-cog score ranging from 0-75, with low scores indicating better cognitive performance.

Outcome measures

Outcome measures
Measure
Placebo
n=9 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=4 Participants
Quinacrine : 100mg by mouth three times a day
ADAS-Cog Change After 2 Months Among Survivors
13.0 units on a scale
Interval 0.0 to 23.0
12.6 units on a scale
Interval -2.0 to 37.0

SECONDARY outcome

Timeframe: Baseline, 2 months

Population: Subject still alive and able to tolerate cognitive testing at month 2 visit

Verbal fluency tests are a kind of psychological test in which participants have to say as many words as possible from a category in 60 seconds. This category (words beginning with letter "D") is phonemic. Higher scores indicate better cognition.

Outcome measures

Outcome measures
Measure
Placebo
n=9 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=5 Participants
Quinacrine : 100mg by mouth three times a day
Change in Phonemic Fluency (Words Beginning With Letter "D")
-2.4 number of words generated
Interval -8.0 to 1.0
-2.2 number of words generated
Interval -5.0 to 0.0

SECONDARY outcome

Timeframe: Baseline, 2 months

Population: Subjects still alive and able to tolerate cognitive testing at month 2 visit.

Verbal fluency tests are a kind of psychological test in which participants have to say as many words as possible from a category in 60 seconds. This category (naming animals) is semantic. Higher scores indicate better cognition.

Outcome measures

Outcome measures
Measure
Placebo
n=9 Participants
Placebo : 100mg by mouth three times a day
Quinacrine
n=5 Participants
Quinacrine : 100mg by mouth three times a day
Change in Semantic Verbal Fluency (Naming Animals)
-3.2 number of words generated
Interval -9.0 to 2.0
-2.2 number of words generated
Interval -9.0 to 5.0

Adverse Events

Placebo Random Assignment

Serious events: 14 serious events
Other events: 9 other events
Deaths: 0 deaths

Quinacrine Random Assignment

Serious events: 13 serious events
Other events: 9 other events
Deaths: 0 deaths

Quinacrine Open-label

Serious events: 14 serious events
Other events: 16 other events
Deaths: 0 deaths

Serious adverse events

Serious adverse events
Measure
Placebo Random Assignment
n=28 participants at risk
Placebo : 100mg by mouth three times a day, Baseline-Month 2 = random assignment (n=28), Month 2+ = optional continuation of assigned drug (n=1).
Quinacrine Random Assignment
n=23 participants at risk
Quinacrine: 100mg by mouth three times a day. Baseline-Month 2 = random assignment (n=23), Month 2+ = optional continuation of assigned drug (n=1).
Quinacrine Open-label
n=24 participants at risk
Quinacrine: Month 2 until death = optional open-label Quinacrine 100mg by mouth three times a day
Gastrointestinal disorders
Diarrhea
0.00%
0/28 • 1 year
4.3%
1/23 • 1 year
0.00%
0/24 • 1 year
Nervous system disorders
Hemorrhage
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
General disorders
Death
39.3%
11/28 • 1 year
43.5%
10/23 • 1 year
33.3%
8/24 • 1 year
Nervous system disorders
Seizure
0.00%
0/28 • 1 year
4.3%
1/23 • 1 year
0.00%
0/24 • 1 year
General disorders
Unclassified shaking
0.00%
0/28 • 1 year
4.3%
1/23 • 1 year
0.00%
0/24 • 1 year
Psychiatric disorders
Agitation
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Renal and urinary disorders
Elevated renal function labs
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Injury, poisoning and procedural complications
Fall
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
8.3%
2/24 • 1 year
Injury, poisoning and procedural complications
Post-LP infection
7.1%
2/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year
Psychiatric disorders
Hallucinations
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Injury, poisoning and procedural complications
Post-LP headache
7.1%
2/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year
Injury, poisoning and procedural complications
Post-LP Dizziness
7.1%
2/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year

Other adverse events

Other adverse events
Measure
Placebo Random Assignment
n=28 participants at risk
Placebo : 100mg by mouth three times a day, Baseline-Month 2 = random assignment (n=28), Month 2+ = optional continuation of assigned drug (n=1).
Quinacrine Random Assignment
n=23 participants at risk
Quinacrine: 100mg by mouth three times a day. Baseline-Month 2 = random assignment (n=23), Month 2+ = optional continuation of assigned drug (n=1).
Quinacrine Open-label
n=24 participants at risk
Quinacrine: Month 2 until death = optional open-label Quinacrine 100mg by mouth three times a day
Gastrointestinal disorders
Abdominal abscess
0.00%
0/28 • 1 year
4.3%
1/23 • 1 year
0.00%
0/24 • 1 year
Psychiatric disorders
Agitation
3.6%
1/28 • 1 year
8.7%
2/23 • 1 year
8.3%
2/24 • 1 year
Hepatobiliary disorders
Elevated Liver Function Tests
0.00%
0/28 • 1 year
13.0%
3/23 • 1 year
50.0%
12/24 • 1 year
Gastrointestinal disorders
Diarrhea
3.6%
1/28 • 1 year
4.3%
1/23 • 1 year
20.8%
5/24 • 1 year
Infections and infestations
Urinary Tract Infection
10.7%
3/28 • 1 year
4.3%
1/23 • 1 year
4.2%
1/24 • 1 year
Blood and lymphatic system disorders
Potential thrombi
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Injury, poisoning and procedural complications
Post-LP complications
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Psychiatric disorders
Hallucination
7.1%
2/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year
Blood and lymphatic system disorders
Pulmonary embolism
0.00%
0/28 • 1 year
4.3%
1/23 • 1 year
4.2%
1/24 • 1 year
Skin and subcutaneous tissue disorders
Rash
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
12.5%
3/24 • 1 year
Injury, poisoning and procedural complications
Hip Fracture
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Musculoskeletal and connective tissue disorders
Elevated creatine kinase
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
General disorders
Dizziness
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
4.2%
1/24 • 1 year
Nervous system disorders
Seizure
0.00%
0/28 • 1 year
0.00%
0/23 • 1 year
8.3%
2/24 • 1 year
Gastrointestinal disorders
Nausea
3.6%
1/28 • 1 year
4.3%
1/23 • 1 year
20.8%
5/24 • 1 year
Gastrointestinal disorders
Vomiting
3.6%
1/28 • 1 year
4.3%
1/23 • 1 year
20.8%
5/24 • 1 year
Blood and lymphatic system disorders
Leukopenia
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year
General disorders
Fever
3.6%
1/28 • 1 year
0.00%
0/23 • 1 year
0.00%
0/24 • 1 year

Additional Information

Michael Geschwind, MD, PhD

UCaliforniaSF

Phone: 415-476-2901

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place