Intellectual DisabilityNCT02414438
Establishing the Clinical Utility of First StepDx PLUS and NextStepDx PLUS Study
A study testing FirstStepDX PLUS and NextStepDX PLUS Webinar and FirstStepDX PLUS and NextStepDX PLUS Test Results in people with Intellectual Disability and Developmental Delay, run by Qure Healthcare, LLC at 1 site in United States.
Trial summary
The study uses a randomized controlled study design of pediatric neurologists and developmental pediatricians and front-line (primary care) pediatricians to determine if use of FirstStepDx PLUS and Next StepDx PLUS are associated with higher clinical quality, less variability in clinical practice, and lower costs from… Read more about this study
- Who is it for?
- Ages Up to 99 yearsHealthy volunteers can take part
- Conditions the study is for
- Intellectual Disability, Developmental Delay
- What is being tested?
- FirstStepDX PLUS and NextStepDX PLUS Webinar and FirstStepDX PLUS and NextStepDX PLUS Test Results
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 217 participants
- Where
- 1 siteUnited States
- Study dates
- Aug 2014to Jan 2015
- Phase
- Interventional
- 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 Up to 99 years
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Who may be able to join
- Provide consent to participate in the study
- Currently practicing board-certified physician in the following specialty areas:
- Pediatric neurologists
- Developmental pediatricians
- General pediatricians
- Have practiced as a board-certified physician for greater than 2 but less than 30 years.
Show all 10Show fewer
- English-speaking
- Community / non-academic based practice setting
- ≥30 pediatric patients under care annually
- Access to the internet
Who cannot join
- Not board certified in their respective area of care
- Academic-based practice
- Have previously used FirstStepDx PLUS and/or NextStepDx PLUS in their care delivery
- Have practiced as a board-certified physician for less than 2 or greater than 30 years.
- Follow <30 pediatric patients annually
- Non-English speaking
- Unable to access the internet
Trial locations and contacts
1 site in 1 country.
About this study
The study uses a randomized controlled study design of pediatric neurologists and developmental pediatricians and front-line (primary care) pediatricians to determine if use of FirstStepDx PLUS and Next StepDx PLUS are associated with higher clinical quality, less variability in clinical practice, and lower costs from decreased resource utilization. The Clinical Performance and Value Vignettes (CPV) used in this study simulate a clinical encounter for individuals with an atypical phenotype and clinical presentation indicative of a possible genetic disorder. We will measure the difference in combined diagnostic and treatment CPV® domain score post-intervention versus baseline comparing intervention and control groups
Read the detailed description
The study is an interventional longitudinal study design of physician practice. 225 specialist and general pediatricians without previous exposure to FirstStepDx PLUS or NextStepDx PLUS will be selected from a nationally representative list of approximately 25,000 board-certified pediatricians and 5,000 specialists. These physicians will be randomized into one of three arms: to receive information regarding FirstStepDx PLUS ("Intervention A"), to receive information about FirstStepDx PLUS and NextStepDx PLUS ("Intervention B") for use in clinical practice, and controls not receiving any intervention. Specifically we will test the hypotheses:
- Clinical practice, specifically decisions around treatment of individuals with disorders postnatal development including DD, ASD, and ID will vary widely among all physician types. This documentation of variation in practice will demonstrate the need for a new diagnostic service that FirstStepDx PLUS and NextStepDx PLUS would fulfill
- FirstStepDx PLUS and NextStepDx PLUS will improve the quality and appropriateness of care and therapeutic plans, as measured by the number of physicians that correctly act on the results of the assay
A Physician Questionnaire will be administered to all physicians. This questionnaire will assess physician, patient and practice characteristics. Data gathered from this set of questions will become part of the baseline (pre-intervention) assessment and used for analysis. At the baseline assessment, Clinical Performance and Value (CPVs) Vignettes, a validated tool to measure physician performance and behavior will be used. CPV vignettes have been used to establish clinical utility in the molecular diagnostic space.
The CPV vignettes used in this study will simulate a clinical encounter for a patient with an atypical clinical presentation indicative of a possible genetic developmental disorder. Each physician will provide open-ended responses regarding clinical care. These responses are scored in five domains (taking a medical history, performing a physical examination, ordering appropriate tests, making a diagnosis and prescribing treatment against explicit evidence and criteria as determined by the literature and by expert physicians. Results are presented as percentage correct controlling for primacy effects using case within pair randomization. Each case will take approximately 15-20 minutes to complete. All case responses will be completed electronically online and confidential. No physician or practice names are used when reporting the results of the study.
The CPVs will be randomly assigned to physicians for each to complete 3 CPVs™ (one from each type). Each of the CPVs will be scored by physicians for changes in clinical practice including treatment changes, frequency of follow up, laboratory tests and imaging studies ordered - see for scoring sheet.
The objective of this study is to assess how FirstStepDx PLUS (and NextStepDx PLUS) testing affects the variability of clinical practice and resultant impact.
Primary Endpoint Differences in CPV diagnosis/treatment domain score post-intervention versus baseline for the intervention and control group physicians).
Secondary Endpoints
- Difference in utilization of appropriate treatment including indicated versus unnecessary therapy pre- and post-intervention between intervention and control groups
- Difference in utilization of laboratory testing such as fluorescence in situ hybridization (FISH) analyses, global assessment, and utilization of other laboratory tests pre- and post-intervention, between intervention and control groups
- Difference in overall Clinical Performance and Value Vignettes (CPV®) scores post-intervention versus baseline between intervention and control groups
- Conditions
- Intellectual Disability, Developmental Delay
- Being tested
- FirstStepDX PLUS and NextStepDX PLUS Webinar, FirstStepDX PLUS and NextStepDX PLUS Test Results
- Medical subject headings
- Intellectual Disability, Learning Disabilities
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
FirstStepDX PLUS and NextStepDX PLUS WebinarOther
A pre-recorded 20-minute webinar on FirstStepDX PLUS and NextStepDX PLUS
FirstStepDX PLUS and NextStepDX PLUS Test ResultsOther
Physicians receive a prompt to order and download FirstStepDX PLUS and NextStepDX PLUS Test Results
| Study group | Role | What they receive |
|---|---|---|
| Current Practice Arm | No intervention | Physicians follow current care procedures |
| FirstStep and NextStep Information | Experimental | Providers receive informational webinar regarding FirstStepDx PLUS and NextStepDx PLUS between rounds and are able to order test results in Round 2 Receives: Other: FirstStepDX PLUS and NextStepDX PLUS Webinar |
| FirstStep and NextStep Results | Experimental | Providers receive informational webinar regarding FirstStepDx PLUS and NextStepDx PLUS between rounds and are specifically prompted to order test results in Round 2 Receives: Other: FirstStepDX PLUS and NextStepDX PLUS Webinar; Other: FirstStepDX PLUS and NextStepDX PLUS Test Results |
What is being measured
The primary outcome is the main question the study is designed to answer.
Diagnosis and Treatment Score
Differences in CPV diagnosis/treatment domain score post-intervention versus baseline for the intervention and control group physicians).
Measured: 4 weeks
Secondary outcomes (1)
Overall CPV score
Differences in overall CPV score post-intervention versus baseline for the intervention and control group physicians).
Measured: 4 weeks
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted10 Apr 2015 (estimated)
- Study startAug 2014
- Primary completionJan 2015
- Study completionJan 2015
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 Intellectual DisabilityStudies of the same condition, open and under way.
- 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
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Health services research
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind
- Who is masked
- Participant
- Enrolment
- 217 participants (actual)
Sponsor and investigators
- Lead sponsor
- Qure Healthcare, LLC
- Sponsor type
- Industry (pharma, biotech, devices)
- Collaborators
- Lineagen
- Responsible party
- Sponsor
- Investigators
- John W Peabody, MD PhD, Principal investigator, QURE Healthcare
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02414438
- Sponsor's protocol ID
- 01-LIN-2014
- Status last verified
- Feb 2026
- First submitted
- 7 Apr 2015
- Last updated
- 27 Feb 2026
- Results posted
- No
- Data monitoring committee
- No
Publications
Peabody JW, Luck J, Glassman P, Jain S, Hansen J, Spell M, Lee M. Measuring the quality of physician practice by using clinical vignettes: a prospective validation study. Ann Intern Med. 2004 Nov 16;141(10):771-80. doi: 10.7326/0003-4819-141-10-200411160-00008.
PubMed 15545677
Study at a glance
From the registry record, last updated by the sponsor on 27 Feb 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Establishing the Clinical Utility of First StepDx PLUS and NextStepDx PLUS Study
- ClinicalTrials.gov ID
- NCT02414438
- Acronym / sponsor ID
- 01-LIN-2014
- Conditions
- Intellectual Disability, Developmental Delay
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 217 participants (actual)
- Lead sponsor
- Qure Healthcare, LLCIndustry (pharma, biotech, devices)
- Collaborators
- Lineagen
- Study start
- Aug 2014
- Primary completion
- Jan 2015 (actual)
- Study completion
- Jan 2015 (actual)
- First posted
- 10 Apr 2015 (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 study uses a randomized controlled study design of pediatric neurologists and developmental pediatricians and front-line (primary care) pediatricians to determine if use of FirstStepDx PLUS and Next StepDx PLUS are associated with higher clinical quality, less variability in clinical practice, and lower costs from decreased resource utilization. The Clinical Performance and Value Vignettes (CPV) used in this study simulate a clinical encounter for individuals with an atypical phenotype and clinical presentation indicative of a possible genetic disorder. We will measure the difference in combined diagnostic and treatment CPV® domain score post-intervention versus baseline comparing intervention and control groups
Detailed description
The study is an interventional longitudinal study design of physician practice. 225 specialist and general pediatricians without previous exposure to FirstStepDx PLUS or NextStepDx PLUS will be selected from a nationally representative list of approximately 25,000 board-certified pediatricians and 5,000 specialists. These physicians will be randomized into one of three arms: to receive information regarding FirstStepDx PLUS ("Intervention A"), to receive information about FirstStepDx PLUS and NextStepDx PLUS ("Intervention B") for use in clinical practice, and controls not receiving any intervention. Specifically we will test the hypotheses:
- Clinical practice, specifically decisions around treatment of individuals with disorders postnatal development including DD, ASD, and ID will vary widely among all physician types. This documentation of variation in practice will demonstrate the need for a new diagnostic service that FirstStepDx PLUS and NextStepDx PLUS would fulfill
- FirstStepDx PLUS and NextStepDx PLUS will improve the quality and appropriateness of care and therapeutic plans, as measured by the number of physicians that correctly act on the results of the assay
A Physician Questionnaire will be administered to all physicians. This questionnaire will assess physician, patient and practice characteristics. Data gathered from this set of questions will become part of the baseline (pre-intervention) assessment and used for analysis. At the baseline assessment, Clinical Performance and Value (CPVs) Vignettes, a validated tool to measure physician performance and behavior will be used. CPV vignettes have been used to establish clinical utility in the molecular diagnostic space.
The CPV vignettes used in this study will simulate a clinical encounter for a patient with an atypical clinical presentation indicative of a possible genetic developmental disorder. Each physician will provide open-ended responses regarding clinical care. These responses are scored in five domains (taking a medical history, performing a physical examination, ordering appropriate tests, making a diagnosis and prescribing treatment against explicit evidence and criteria as determined by the literature and by expert physicians. Results are presented as percentage correct controlling for primacy effects using case within pair randomization. Each case will take approximately 15-20 minutes to complete. All case responses will be completed electronically online and confidential. No physician or practice names are used when reporting the results of the study.
The CPVs will be randomly assigned to physicians for each to complete 3 CPVs™ (one from each type). Each of the CPVs will be scored by physicians for changes in clinical practice including treatment changes, frequency of follow up, laboratory tests and imaging studies ordered - see for scoring sheet.
The objective of this study is to assess how FirstStepDx PLUS (and NextStepDx PLUS) testing affects the variability of clinical practice and resultant impact.
Primary Endpoint Differences in CPV diagnosis/treatment domain score post-intervention versus baseline for the intervention and control group physicians).
Secondary Endpoints
- Difference in utilization of appropriate treatment including indicated versus unnecessary therapy pre- and post-intervention between intervention and control groups
- Difference in utilization of laboratory testing such as fluorescence in situ hybridization (FISH) analyses, global assessment, and utilization of other laboratory tests pre- and post-intervention, between intervention and control groups
- Difference in overall Clinical Performance and Value Vignettes (CPV®) scores post-intervention versus baseline between intervention and control groups
Study design
- Primary purpose
- Health services research
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind (participant)
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| Current Practice Arm | No intervention | –Physicians follow current care procedures |
| FirstStep and NextStep Information | Experimental | Other: FirstStepDX PLUS and NextStepDX PLUS WebinarProviders receive informational webinar regarding FirstStepDx PLUS and NextStepDx PLUS between rounds and are able to order test results in Round 2 |
| FirstStep and NextStep Results | Experimental | Other: FirstStepDX PLUS and NextStepDX PLUS Webinar, Other: FirstStepDX PLUS and NextStepDX PLUS Test ResultsProviders receive informational webinar regarding FirstStepDx PLUS and NextStepDx PLUS between rounds and are specifically prompted to order test results in Round 2 |
Who may qualify
- Ages
- Up to 99 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (10 listed)
- Provide consent to participate in the study
- Currently practicing board-certified physician in the following specialty areas:
- Have practiced as a board-certified physician for greater than 2 but less than 30 years.
- English-speaking
- Community / non-academic based practice setting
Key exclusion criteria (7 listed)
- Not board certified in their respective area of care
- Academic-based practice
- Have previously used FirstStepDx PLUS and/or NextStepDx PLUS in their care delivery
- Have practiced as a board-certified physician for less than 2 or greater than 30 years.
- Follow <30 pediatric patients annually
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 |
|---|---|---|
| FirstStepDX PLUS and NextStepDX PLUS WebinarA pre-recorded 20-minute webinar on FirstStepDX PLUS and NextStepDX PLUS | Other | FirstStep and NextStep Information, FirstStep and NextStep Results |
| FirstStepDX PLUS and NextStepDX PLUS Test ResultsPhysicians receive a prompt to order and download FirstStepDX PLUS and NextStepDX PLUS Test Results | Other | FirstStep and NextStep Results |
Primary outcome
Diagnosis and Treatment Score
Time frame: 4 weeks
Differences in CPV diagnosis/treatment domain score post-intervention versus baseline for the intervention and control group physicians).
1 secondary outcome
Overall CPV score
Time frame: 4 weeks
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 27 Feb 2026.
- Background: PubMed 15545677Peabody JW, Luck J, Glassman P, Jain S, Hansen J, Spell M, Lee M. Measuring the quality of physician practice by using clinical vignettes: a prospective validation study. Ann Intern Med. 2004 Nov 16;141(10):771-80. doi: 10.7326/0003-4819-141-10-200411160-00008.
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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.
John W Peabody, MD PhD principal investigator
QURE Healthcare
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing FirstStepDX PLUS and NextStepDX PLUS Webinar and FirstStepDX PLUS and NextStepDX PLUS Test Results in people with Intellectual Disability and Developmental Delay, run by Qure Healthcare, LLC at 1 site in United States.
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 10 inclusion and 7 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 27 Feb 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. 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?
Diagnosis and Treatment Score (time frame: 4 weeks). 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 NCT02414438, 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 27 Feb 2026.