Multiple SclerosisPERSISTNCT01405872
Persistence, Adherence, Quality of Life, and Treatment Satisfaction With Avonex® PEN™.
An observational study of Multiple Sclerosis, run by Biogen at 64 sites in 10 countries.
Trial summary
The primary objective of the study is to determine physician reported persistence with the Avonex PEN at Month 12/End of Study as well as determining factors associated with persistence. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Multiple Sclerosis
- What is being tested?
- AVONEX PEN
- How many people
- 270 participants
- Where
- 64 sitesin 10 countries
- Study dates
- Sep 2011to Sep 2013
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Multiple Sclerosis patients who have made the decision, along with their health care provider, to begin therapy with Avonex PEN.
Who may be able to join
- Ability to understand the purpose and risks of the study and provide signed and dated informed consent
- Must satisfy the locally approved therapeutic indications for the Avonex PEN
- Decision to treat with Avonex PEN must precede enrollment
- Must have no more than two (2) injections with the Avonex PEN prior to enrollment
Who cannot join
- Inability to comply with study requirements
- Other unspecified reasons that, in the opinion of the investigator or Biogen Idec, make the patient unsuitable for enrollment
Trial locations and contacts
64 sites in 10 countries.
64 sites in 10 countries
Germany25 sites
Research Site
Aachen
Research Site
Bamberg
Research Site
Berlin
Research Site
Dresden
Research Site
Eisenach
Research Site
Erbach im Odenwald
Research Site
Freiburg im Breisgau
Research Site
Hamburg
Research Site
Heidenheim
Research Site
Herford
Research Site
Itzehoe
Research Site
Kastellaun
Research Site
München
Research Site
Nagold
Research Site
Potsdam
Research Site
Regensburg
Research Site
Rottweil
Research Site
Rüdersdorf
Research Site
Schwendi
Research Site
Siegen
Research Site
Sinsheim
Research Site
Stade
Research Site
Weil am Rhein
Research Site
Weisbaden
Research Site
Wolfratshausen
Sweden7 sites
Research Site
Helsingborg
Research Site
Karlstad
Research Site
Linköping
Research Site
Norrköping
Research Site
Skövde
Research Site
Stockholm
Research Site
Trollhättan
United Kingdom7 sites
Research Site
Dundee
Research Site
Glasgow
Research Site
Hammersmith
Research Site
Haywards Heath
Research Site
Irvine
Research Site
Leicester
Research Site
Sheffield
France6 sites
Research Site
Amiens
Research Site
Clermont-Ferrand
Research Site
Créteil
Research Site
Nancy
Research Site
Rouen
Research Site
Strasbourg
Netherlands5 sites
Research Site
's-Hertogenbosch
Research Site
Eindhoven
Research Site
Heerlen
Research Site
Leeuwarden
Research Site
Sittard
Norway5 sites
Research Site
Bergen
Research Site
Drammem
Research Site
Førde
Research Site
Molde
Research Site
Tønsberg
Switzerland4 sites
Research Site
Lucerne
Research Site
Lugano
Research Site
Sankt Gallen
Research Site
Sion
Denmark3 sites
Research Site
Glostrup Municipality
Research Site
Holstebro
Research Site
Næstved
About this study
Official title: An Observational Study to Assess Persistence, Adherence, Quality of Life, and Treatment Satisfaction in Patients Beginning Therapy With the Avonex® PEN™.
The primary objective of the study is to determine physician reported persistence with the Avonex PEN at Month 12/End of Study as well as determining factors associated with persistence. The secondary objectives for this study are as follows: To evaluate the tolerability for treatment administration of the Avonex PEN at Months 3, 6, and 12; To evaluate patient quality of life (QoL) while using the Avonex PEN for treatment administration at Months 3, 6, and 12; To evaluate clarity of directions for use of the Avonex PEN at Month 3; To evaluate ease of use and the patient's assessment of the injection procedure with the Avonex PEN at Months 3, 6, and 12; To evaluate patient reported adherence at Months 6 and 12; To evaluate physician reported persistence at Month 6; To evaluate overall patient satisfaction with the use of the Avonex PEN for treatment administration at Months 3, 6, and 12; To evaluate patient reported fear of injection at Months 3, 6, and 12; and To evaluate the percentage of patients switching from caregiver to self-injection at Months 3, 6, and 12.
- Conditions
- Multiple Sclerosis
- Being tested
- AVONEX PEN
- Medical subject headings
- Multiple Sclerosis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
AVONEX PENOther
Participants receive Avonex PEN commercially prescribed according to the local prescribing information.
What is being measured
The primary outcome is the main question the study is designed to answer.
Persistence with Avonex PEN therapy at Month 12/End of Study as measured by the percentage of patients remaining on therapy at Month 12/End of Study as reported by a physician.
Measured: 12 months
Secondary outcomes (11)
Tolerability of Avonex PEN as measured by Injection Site Pain
Measured: Months 3, 6, and 12
Patient Quality of Life as measured by the EuroQol 5 domain (EQ-5D) Questionnaire
Measured: Months 3, 6, and 12
Clarity of directions for use of the Avonex PEN as measured by the Avonex PEN Instruction Grading Scale
Measured: Month 3
Ease of use and patient's assessment of the injection procedure with the Avonex PEN as measured by Ease of Use Grading Scale
Measured: Months 3, 6, and 12
Patient reported adherence as measured by number of doses missed
Measured: Over the first 6 months and during Months 6 & 12
Physician reported persistence as measured by number of patients still on therapy
Measured: Month 6
Patient reported satisfaction with the Avonex PEN as measured by the Patient Satisfaction Questionnaire
Measured: Months 3, 6 and 12
Patient reported fear of injection using the Fear of Injection Scale
Measured: Months 3, 6 and 12
Percent of patients switching from caregiver to self-injection
Measured: Months 3, 6, and 12
Tolerability of Avonex PEN as measured by Injection Site Reaction
Measured: Months 3, 6 and 12
Ease of use and patient's assessment of the injection procedure with the Avonex PEN as measured by Patient Assessment of Injection Procedure
Measured: Months 3, 6 and 12
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted29 Jul 2011 (estimated)
- Study startSep 2011
- Primary completionSep 2013
- Study completionSep 2013
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Multiple SclerosisStudies of the same condition, open and under way.
- More trials run by BiogenThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 270 participants (actual)
Sponsor and investigators
- Lead sponsor
- Biogen
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Medical Director, Study director, Biogen
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01405872
- Sponsor's protocol ID
- 108MS402
- Acronym
- PERSIST
- Status last verified
- Sep 2014
- First submitted
- 28 Jul 2011
- Last updated
- 9 Sep 2014
- Results posted
- No
- Data monitoring committee
- No
Publications
Hupperts R, Becker V, Friedrich J, Gobbi C, Salgado AV, Sperling B, You X. Multiple sclerosis patients treated with intramuscular IFN-beta-1a autoinjector in a real-world setting: prospective evaluation of treatment persistence, adherence, quality of life and satisfaction. Expert Opin Drug Deliv. 2015 Jan;12(1):15-25. doi: 10.1517/17425247.2015.989209. Epub 2014 Nov 28.
PubMed 25430947
Study at a glance
From the registry record, last updated by the sponsor on 9 Sep 2014. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- An Observational Study to Assess Persistence, Adherence, Quality of Life, and Treatment Satisfaction in Patients Beginning Therapy With the Avonex® PEN™.
- ClinicalTrials.gov ID
- NCT01405872
- Acronym / sponsor ID
- PERSIST / 108MS402
- Conditions
- Multiple Sclerosis
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 270 participants (actual)
- Lead sponsor
- BiogenIndustry (pharma, biotech, devices)
- Study start
- Sep 2011
- Primary completion
- Sep 2013 (actual)
- Study completion
- Sep 2013 (actual)
- First posted
- 29 Jul 2011 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The primary objective of the study is to determine physician reported persistence with the Avonex PEN at Month 12/End of Study as well as determining factors associated with persistence. The secondary objectives for this study are as follows: To evaluate the tolerability for treatment administration of the Avonex PEN at Months 3, 6, and 12; To evaluate patient quality of life (QoL) while using the Avonex PEN for treatment administration at Months 3, 6, and 12; To evaluate clarity of directions for use of the Avonex PEN at Month 3; To evaluate ease of use and the patient's assessment of the injection procedure with the Avonex PEN at Months 3, 6, and 12; To evaluate patient reported adherence at Months 6 and 12; To evaluate physician reported persistence at Month 6; To evaluate overall patient satisfaction with the use of the Avonex PEN for treatment administration at Months 3, 6, and 12; To evaluate patient reported fear of injection at Months 3, 6, and 12; and To evaluate the percentage of patients switching from caregiver to self-injection at Months 3, 6, and 12.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Multiple Sclerosis patients who have made the decision, along with their health care provider, to begin therapy with Avonex PEN.
Key inclusion criteria (4 listed)
- Ability to understand the purpose and risks of the study and provide signed and dated informed consent
- Must satisfy the locally approved therapeutic indications for the Avonex PEN
- Decision to treat with Avonex PEN must precede enrollment
- Must have no more than two (2) injections with the Avonex PEN prior to enrollment
Key exclusion criteria (2 listed)
- Inability to comply with study requirements
- Other unspecified reasons that, in the opinion of the investigator or Biogen Idec, make the patient unsuitable for enrollment
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| AVONEX PENParticipants receive Avonex PEN commercially prescribed according to the local prescribing information. | Other | – |
Primary outcome
Persistence with Avonex PEN therapy at Month 12/End of Study as measured by the percentage of patients remaining on therapy at Month 12/End of Study as reported by a physician.
Time frame: 12 months
11 secondary outcomes
Tolerability of Avonex PEN as measured by Injection Site Pain
Time frame: Months 3, 6, and 12
Patient Quality of Life as measured by the EuroQol 5 domain (EQ-5D) Questionnaire
Time frame: Months 3, 6, and 12
Clarity of directions for use of the Avonex PEN as measured by the Avonex PEN Instruction Grading Scale
Time frame: Month 3
Ease of use and patient's assessment of the injection procedure with the Avonex PEN as measured by Ease of Use Grading Scale
Time frame: Months 3, 6, and 12
Patient reported adherence as measured by number of doses missed
Time frame: Over the first 6 months and during Months 6 & 12
Physician reported persistence as measured by number of patients still on therapy
Time frame: Month 6
Patient reported satisfaction with the Avonex PEN as measured by the Patient Satisfaction Questionnaire
Time frame: Months 3, 6 and 12
Patient reported fear of injection using the Fear of Injection Scale
Time frame: Months 3, 6 and 12
Percent of patients switching from caregiver to self-injection
Time frame: Months 3, 6, and 12
Tolerability of Avonex PEN as measured by Injection Site Reaction
Time frame: Months 3, 6 and 12
Ease of use and patient's assessment of the injection procedure with the Avonex PEN as measured by Patient Assessment of Injection Procedure
Time frame: Months 3, 6 and 12
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 9 Sep 2014.
- Derived from this study: PubMed 25430947Hupperts R, Becker V, Friedrich J, Gobbi C, Salgado AV, Sperling B, You X. Multiple sclerosis patients treated with intramuscular IFN-beta-1a autoinjector in a real-world setting: prospective evaluation of treatment persistence, adherence, quality of life and satisfaction. Expert Opin Drug Deliv. 2015 Jan;12(1):15-25. doi: 10.1517/17425247.2015.989209. Epub 2014 Nov 28.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Medical Director study director
Biogen
64 sites in 10 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Multiple Sclerosis, run by Biogen at 64 sites in 10 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 9 Sep 2014. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 64 sites in Germany, Sweden, United Kingdom, France, Netherlands and 5 more countries. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Persistence with Avonex PEN therapy at Month 12/End of Study as measured by the percentage of patients remaining on therapy at Month 12/End of Study as reported by a physician. (time frame: 12 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT01405872, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 9 Sep 2014.