PIK3CA-Related Overgrowth Spectrum (PROS)EPIK-P1NCT04285723
Retrospective Chart Review Study of Patients With PIK3CA-Related Overgrowth Spectrum Who Have Received Alpelisib
An observational study of PIK3CA-Related Overgrowth Spectrum (PROS), run by Novartis Pharmaceuticals at 7 sites in 5 countries.
Trial summary
The study was a site-based retrospective non-interventional medical chart review of pediatric and adult male and female patients with PIK3CA-Related Overgrowth Spectrum (PROS) who initiated alpelisib at least 24 weeks before the cut-off date at a MAP site. The study cut-off date was 09-Mar-2020. Read more about this study
- Who is it for?
- Ages 2 years and older
- Conditions the study is for
- PIK3CA-Related Overgrowth Spectrum (PROS)
- What is being tested?
- alpelisib
- How many people
- 57 participants
- Where
- 7 sitesin 5 countries
- Study dates
- 9 Jun 2020to 16 Apr 2021
- Phase
- Observational
- Are there results?
- Yes, posted in the registrySummary in the doctors' view
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 2 years and older
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Patients who participated in the compassionate use program and received alpelisib for the treatment of PIK3CA-related overgrowth spectrum (PROS).
Who may be able to join
- Patient (adult or pediatric) is ≥ 2 years of age
- Patient has a physician confirmed/documented diagnosis of PROS
- Patient has a documented evidence of a mutation in the PIK3CA gene
- Patient's condition was assessed by the treating physician as severe or life threatening and treatment was deemed necessary
- Patient has been treated with at least one dose of alpelisib, initiated on or before 23-Sep-2019 (i.e. at least 24 weeks before the cut-off date of the 09-Mar-2020)
- Patient has medical chart history available during enrollment in the Novartis MAP
- Patient (or parent/guardian in case of pediatric patient) consented to participate in the study (as required by local ethics regulations) Inclusion criteria for MAP enrollment (assessed at the time of alpelisib initiation)
Who cannot join
None listed.
Trial locations and contacts
7 sites in 5 countries.
7 sites in 5 countries
France3 sites
Novartis Investigative Site
Dijon, 21000
Novartis Investigative Site
Montpellier, Herault, 34059
Novartis Investigative Site
Paris, 75015
United States1 site
Boston Childrens Hospital
Boston, Massachusetts, 02215
About this study
Official title: Retrospective Chart Review Study of Patients With PIK3CA-Related Overgrowth Spectrum (PROS) Who Have Received Alpelisib as Part of a Compassionate Use Program (EPIK-P1)
The study was a site-based retrospective non-interventional medical chart review of pediatric and adult male and female patients with PIK3CA-Related Overgrowth Spectrum (PROS) who initiated alpelisib at least 24 weeks before the cut-off date at a MAP site. The study cut-off date was 09-Mar-2020.
Patient-level data were abstracted from medical charts of all eligible patients at all participating sites. Study completion date refers to the last date data was extracted.
Information from patients treated with alpelisib was used to describe the efficacy and safety of alpelisib in PROS patients.
Read the detailed description
The index date (baseline) is defined as the date of alpelisib initiation. The study period is the period from the index date up to the most recent data available at the time of the cut-off date.
The maximum follow-up was 187 weeks.
- Being tested
- alpelisib
- Keywords
- alpelisib, PIK3CA, BYL719, PROS, Retrospective chart review study, EPIK-P1
- Medical subject headings
- Hereditary Sensory and Autonomic Neuropathies
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
alpelisibOther
Retrospective observational case-only study. There is no treatment allocation. Patients with severe or life-threatening PROS who have received alpelisib as part of a compassionate use program were invited to participate.
| Study group | Role | What they receive |
|---|---|---|
| alpelisib | Patients treated with alpelisib Receives: Other: alpelisib |
What is being measured
The primary outcome is the main question the study is designed to answer.
Percentage of Patients Responders and Non-responders at Week 24
Response is defined by achieving at least 20% reduction from index date in the sum of measurable target lesion volume (1 to 3 lesions, via central review of imaging scans), provided that none of the individual target lesions have ≥ 20% increase from index date and in absence of progression of non-target lesions and without new lesions.
Measured: Index date and week 24 or 6 months (± 4 weeks)
Secondary outcomes (20)
Percent Change in the Sum of Measurable Target Lesion Volume
Percent change in the sum of measurable target lesion (1 to 3 lesions) volume, as assessed by a central review of imaging scans, as measured by the change between the index date (or up to 24 weeks prior) and key time-points following the index date.
The index date: (baseline) was defined as the date of alpelisib initiation End of study: patients were followed up to a maximum of 187 weeks.
Measured: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Percent Change in the Sum of All Measurable Lesion Volume
Percent change in the sum of all measurable (target and non-target) lesion volume, as assessed by a central review of imaging scans, as measured by the change between the index date (or up to 24 weeks prior) and key time-points following the index date.
The index date (baseline) was defined as the date of alpelisib initiation. End of study: patients were followed up to a maximum of 187 weeks As no measurable non-target lesions were identified, the results for changes in the sum of all measurable (target and non-target) lesion volume were identical to the results presented for measurable target lesion.
Measured: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Percent Change in the Sum of All Measurable Non-target Lesion Volume
Percent change in the sum of all measurable non-target lesion volume, as assessed by a central review of imaging scans, as measured by the change between the index date (or up to 24 weeks prior) and key time-points following the index date.
The index date (baseline) was defined as the date of alpelisib initiation.
Measured: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Mean Duration of Response (DoR)
Duration of response is defined as the time from first documented response, to the date of the first documented disease progression or death due to any cause.
Response is defined by achieving at least 20% reduction from index date in the sum of measurable target lesion volume (1 to 3 lesions, via central review of imaging scans), provided that none of the individual target lesions have ≥ 20% increase from index date and in absence of progression of non-target lesions and without new lesions.
Disease progression is defined as an increase of any individual target lesions of ≥ 20% in volume from previous assessment, progression of non-target PIK3CA Related Overgrowth Spectrum (PROS) lesions or appearance of a new PROS lesion.
Measured: Up to 187 weeks
Reasons for Discontinuation of Concomitant PROS-related Non-drug Treatments
Number of participants with concomitant PIK3CA Related Overgrowth Spectrum (PROS)-related non-drug treatments and other medical interventions by reason for discontinuation.
A patient may have multiple information, but was counted only once in type of other supportive non-drug treatment if more than one type in this category has been reported.
Measured: Up to 187 weeks
Participants With Concomitant PROS-related Medications Over Time
Number of participants with at least one concomitant utilization of PIK3CA Related Overgrowth Spectrum (PROS)-related medication.
End of study: patients were followed up to a maximum of 187 weeks. Results are provided for the full study population as planned and documented in the protocol and SAP, and not by age group.
Measured: Index date, week 24 and end of study
Number of PROS-related Completed Surgeries During the Study Period
Number of surgeries by reason of surgery. A patient may have multiple anatomical sites of surgery and types of surgery on the same day.
Measured: Up to 187 weeks
Number of Patients With Improvement in Most Frequent PROS-related Signs and Symptoms
Improvement in PIK3CA Related Overgrowth Spectrum (PROS) signs and symptoms was defined based on Common Toxicity Criteria (CTC) grade reduction or resolution of the event from index date.
CTC is a set of criteria for the standardized classification of adverse effects of drugs used in cancer therapy. The Common Terminology Criteria for Adverse Events (CTCAE) system is a product of the US National Cancer Institute (NCI). For this study, version 4.03 was used
Measured: Index date and week 24 or 6 months (± 4 weeks)
Change in Performance Status Score
Participants with a change in performance status score (ECOG, Karnofsky, Lansky) between the index date and week 24. Patients completed one questionnaire (ECOG, Karnofsky or Lansky) based on physicians choice.
The Eastern Cooperative Oncology Group (ECOG) score runs from 0 to 5, with 0 denoting perfect health and 5 death. The Karnofsky Performance Score (KPS) and Lansky score run from 0 to 100, where 0 is death and 100 is perfect health.
For the ECOG scale, "improvement" is defined as a decrease by at least 1 point and and "worsening" is defined as an increase by at least 1 point. For the Karnofsky and Lansky scale, "improvement" is defined as an increase by at least 20 points and worsening is defined as a decrease by at least 20 points.
If neither of the criteria for improvement or worsening is met, then it is considered stable.
Measured: Index date and week 24 or 6 months (± 4 weeks)
Functional Status - Mobility Assessment
Change in functional status: Mobility severity assessment measured up to the judgment of the investigator.
A patient may have multiple information
Measured: Up to 187 weeks
Change From Index Date in Functional Status - School Status During the Study Period
Change in functional status: School status during the study period (no attendance, part-time or full time).
Improvement is defined as a shift from reporting of "No attendance" to "Part-time" as well as , "Part-time" or "No attendance" to "Full-time"; Worsening is defined as a shift from reporting of "Part-time" to "No attendance", as well as from "Full-time" to "Part-time" or "No attendance".
If neither of the criteria for improvement or worsening is met, then it is considered stable.
Measured: Index date, week 24 and end of study (up to 187 weeks)
Change From Index Date in Functional Status - Work Status
Change in functional status: Work status assessment during the study period (no attendance, part-time, full-time or unemployed).
Improvement is defined as a shift from reporting of "No attendance" to "Part-time" or "Full time", from "Part-time" to "Full-time", as well as from "Unemployed" to "Part-time" or "Full-time" work.
Worsening is defined as a shift from reporting of "Part-time" to "No attendance", "Full-time" to "Part-time" or "No attendance" as well as "Part-time" or "Full-time" to "Unemployed" status.
Change in score is only applicable if both index date and post-index date information are available.
If a patient has more than 1 score reported within the same time window, the worst is considered.
If neither of the criteria for improvement or worsening is met, then it is considered stable.
Measured: Index date, week 24 and end of study
Health Resource Utilization (HRU) - Number of Hospitalizations Per Patient
Hospitalizations starting on or after the start of study treatment (index date) or starting prior to and continuing after the start of study treatment are summarized.
Measured: Up to 187 weeks
Number of Patients With Grade 3/4 on Laboratory Assessments: Hematology
Worst post-index date hematology abnormalities based on Common Toxicity Criteria (CTC) grades during the study period.
Grade refers to the severity of the AE: Grade 1 Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated. Grade 2 Moderate; minimal, local or noninvasive intervention indicated; limiting age-appropriate instrumental activities of daily living. Grade 3 Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self care activities of daily living. Grade 4 Life-threatening consequences; urgent intervention indicated.
Patients are counted only for the worst grade observed post-index date values. Laboratory assessments performed more than 30 days after last study treatment administration date are not summarized.
Measured: Up to 187 weeks
Number of Patients With Grade 3/4 on Clinical Assessments - Clinical Chemistry
Worst post-index date biochemistry abnormalities based on Common Toxicity Criteria (CTC) grades.
Grade refers to the severity of the AE: Grade 1 Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated. Grade 2 Moderate; minimal, local or noninvasive intervention indicated; limiting age-appropriate instrumental activities of daily living. Grade 3 Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self care activities of daily living. Grade 4 Life-threatening consequences; urgent intervention indicated.
Patients are counted only for the worst grade observed post-index date values. Laboratory assessments performed more than 30 days after last study treatment administration date are not summarized.
Measured: 187 weeks
Notable Vital Sign Values During the Study Period - Pediatric Patients
Low/High: Indicating abnormal value/change from index date.
High systolic blood pressure: ≥95th percentile of the age and height group Low Systolic blood pressure: ≤5th percentile of the age and height group. High diastolic blood pressure: ≥95th percentile of the age and height group Low diastolic blood pressure: ≤5th percentile of the age and height group. High pulse rate (bpm): 2-3 years: >128; 3-4 years: >123; 4-6 years: >117; 6-8 years: >111; 8-12years: >103; 12-15 years: >96; ≥15 years: >92 Low pulse rate (bpm): 2-3 years: <92; 3-4 years: <86; 4-6 years: <81; 6-8 years: <74; 8-12 years: <67; 12-15 years: <62; ≥15 years: <58.
High weight: increase from baseline of ≥2 Body mass index (BMI) for age percentile categories Low weight: decrease from baseline of ≥2 BMI-for-age percentile categories
Measured: End of study (up to week 187)
Notable Vital Sign Values During the Study Period - Adult Patients
Low/High: Indicating abnormal value/change from index date.
High systolic blood pressure: ≥180 mmHg and increase ≥20 mmHg Low systolic blood pressure: ≤90 mmHg and decrease ≥20 mmHg. High diastolic blood pressure: ≥105 mmHg and increase ≥15 mmHg Low diastolic blood pressure: ≤50 mmHg and decrease ≥15 mmHg. High pulse rate: ≥120 bpm and increase ≥15 bpm Low pulse rate: ≤ 50 bpm and decrease ≥15 bpm. High weight: Increase ≥10% Low weight: Decrease ≥10%
Measured: End of study (up to week 187)
Number of Participants With Notable ECG Values.
Notable Electrocardiogram (ECG) values during the study period
Measured: Up to week 187
Growth and Development in Pediatric Population
Assessed in patients who were aged <18 years at the time of alpelisib initiation.
SDS (standard deviation scores) for height and BMI are obtained from the WHO Growth Charts, and SDS for height and weight velocity are obtained from Baumgartner et al. (1986). Height or weight velocity is a variable derived from the measurement of height or weight at different times and represents the increase in height or weight during a fixed period.
SD- scores are used to describe how far a measurement is from the median (average).
Weight-for-age reference data are not available beyond age 10.
Measured: Week 24 or 6 months (± 4 weeks)
Overview of Number of Patients With Adverse Events (AEs)
A patient with multiple severity grades for an AE is only counted under the maximum grade.
All grades includes any AEs with missing grade. Grade refers to the severity of the AE: Grade 1 Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated. Grade 2 Moderate; minimal, local or noninvasive intervention indicated; limiting age-appropriate instrumental activities of daily living. Grade 3 Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self care activities of daily living. Grade 4 Life-threatening consequences; urgent intervention indicated.
Measured: Up to 187 weeks
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted26 Feb 2020
- Study start9 Jun 2020
- Primary completion16 Apr 2021
- Study completion16 Apr 2021
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Posted resultsParticipant flow, outcome measures and adverse events reported by the sponsor.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for PIK3CA-Related Overgrowth Spectrum (PROS)Studies of the same condition, open and under way.
- More trials run by Novartis PharmaceuticalsThe 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
- Case only
- Time perspective
- Retrospective
- Enrolment
- 57 participants (actual)
Sponsor and investigators
- Lead sponsor
- Novartis Pharmaceuticals
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
- Investigators
- Novartis Pharmaceuticals, Study director, Novartis Pharmaceuticals
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04285723
- Sponsor's protocol ID
- CBYL719F12002
- Acronym
- EPIK-P1
- Status last verified
- May 2022
- First submitted
- 26 Nov 2019
- Last updated
- 9 Feb 2023
- Results posted
- Yes, on ClinicalTrials.gov
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Fujino A, Kuniyeda K, Nozaki T, Ozeki M, Ohyama T, Sato I, Kamibeppu K, Tanaka A, Uemura N, Kanmuri K, Nakamura K, Kobayashi F, Suenobu S, Nomura T, Hayashi A, Nagao M, Kato A, Aramaki-Hattori N, Imagawa K, Ishikawa K, Ochi J, Horiuchi S, Nagabukuro H. The Prospective Natural History Study of Patients with Intractable Venous Malformation and Klippel-Trenaunay Syndrome to Guide Designing a Proof-of-Concept Clinical Trial for Novel Therapeutic Intervention. Lymphat Res Biol. 2024 Feb;22(1):27-36. doi: 10.1089/lrb.2023.0023. Epub 2023 Dec 19.
PubMed 38112724Canaud G, Lopez Gutierrez JC, Irvine AD, Vabres P, Hansford JR, Ankrah N, Branle F, Papadimitriou A, Ridolfi A, O'Connell P, Turner S, Adams DM. Alpelisib for treatment of patients with PIK3CA-related overgrowth spectrum (PROS). Genet Med. 2023 Dec;25(12):100969. doi: 10.1016/j.gim.2023.100969. Epub 2023 Aug 24.
PubMed 37634128Singh S, Bradford D, Li X, Mishra-Kalyani PS, Shen YL, Wang L, Zhao H, Xiong Y, Liu J, Charlab R, Kraft J, Khasar S, Miller CP, Rivera DR, Kluetz PG, Pazdur R, Beaver JA, Singh H, Donoghue M. FDA Approval Summary: Alpelisib for PIK3CA-Related Overgrowth Spectrum. Clin Cancer Res. 2024 Jan 5;30(1):23-28. doi: 10.1158/1078-0432.CCR-23-1270.
PubMed 37624421
Study at a glance
From the registry record, last updated by the sponsor on 9 Feb 2023. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Retrospective Chart Review Study of Patients With PIK3CA-Related Overgrowth Spectrum (PROS) Who Have Received Alpelisib as Part of a Compassionate Use Program (EPIK-P1)
- ClinicalTrials.gov ID
- NCT04285723
- Acronym / sponsor ID
- EPIK-P1 / CBYL719F12002
- Keywords
- alpelisib, PIK3CA, BYL719, PROS, Retrospective chart review study, EPIK-P1
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 57 participants (actual)
- Lead sponsor
- Novartis PharmaceuticalsIndustry (pharma, biotech, devices)
- Study start
- 9 Jun 2020 (actual)
- Primary completion
- 16 Apr 2021 (actual)
- Study completion
- 16 Apr 2021 (actual)
- First posted
- 26 Feb 2020 (actual)
- Results
- Posted 9 Feb 2023
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The study was a site-based retrospective non-interventional medical chart review of pediatric and adult male and female patients with PIK3CA-Related Overgrowth Spectrum (PROS) who initiated alpelisib at least 24 weeks before the cut-off date at a MAP site. The study cut-off date was 09-Mar-2020.
Patient-level data were abstracted from medical charts of all eligible patients at all participating sites. Study completion date refers to the last date data was extracted.
Information from patients treated with alpelisib was used to describe the efficacy and safety of alpelisib in PROS patients.
Detailed description
The index date (baseline) is defined as the date of alpelisib initiation. The study period is the period from the index date up to the most recent data available at the time of the cut-off date.
The maximum follow-up was 187 weeks.
Study design
- Observational model
- Case only
- Time perspective
- Retrospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| alpelisib | – | Other: alpelisibPatients treated with alpelisib |
Who may qualify
- Ages
- 2 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Patients who participated in the compassionate use program and received alpelisib for the treatment of PIK3CA-related overgrowth spectrum (PROS).
Key inclusion criteria (7 listed)
- Patient (adult or pediatric) is ≥ 2 years of age
- Patient has a physician confirmed/documented diagnosis of PROS
- Patient has a documented evidence of a mutation in the PIK3CA gene
- Patient's condition was assessed by the treating physician as severe or life threatening and treatment was deemed necessary
- Patient has been treated with at least one dose of alpelisib, initiated on or before 23-Sep-2019 (i.e. at least 24 weeks before the cut-off date of the 09-Mar-2020)
Key exclusion criteria (0 listed)
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 |
|---|---|---|
| alpelisibRetrospective observational case-only study. There is no treatment allocation. Patients with severe or life-threatening PROS who have received alpelisib as part of a compassionate use program were invited to participate. | Other | alpelisib |
Primary outcome
Percentage of Patients Responders and Non-responders at Week 24
Time frame: Index date and week 24 or 6 months (± 4 weeks)
Response is defined by achieving at least 20% reduction from index date in the sum of measurable target lesion volume (1 to 3 lesions, via central review of imaging scans), provided that none of the individual target lesions have ≥ 20% increase from index date and in absence of progression of non-target lesions and without new lesions.
20 secondary outcomes
Percent Change in the Sum of Measurable Target Lesion Volume
Time frame: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Percent Change in the Sum of All Measurable Lesion Volume
Time frame: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Percent Change in the Sum of All Measurable Non-target Lesion Volume
Time frame: Index date, week 4, 12 , 24, 52 and end of study (up to a maximum of week 187)
Mean Duration of Response (DoR)
Time frame: Up to 187 weeks
Reasons for Discontinuation of Concomitant PROS-related Non-drug Treatments
Time frame: Up to 187 weeks
Participants With Concomitant PROS-related Medications Over Time
Time frame: Index date, week 24 and end of study
Number of PROS-related Completed Surgeries During the Study Period
Time frame: Up to 187 weeks
Number of Patients With Improvement in Most Frequent PROS-related Signs and Symptoms
Time frame: Index date and week 24 or 6 months (± 4 weeks)
Change in Performance Status Score
Time frame: Index date and week 24 or 6 months (± 4 weeks)
Functional Status - Mobility Assessment
Time frame: Up to 187 weeks
Change From Index Date in Functional Status - School Status During the Study Period
Time frame: Index date, week 24 and end of study (up to 187 weeks)
Change From Index Date in Functional Status - Work Status
Time frame: Index date, week 24 and end of study
Health Resource Utilization (HRU) - Number of Hospitalizations Per Patient
Time frame: Up to 187 weeks
Number of Patients With Grade 3/4 on Laboratory Assessments: Hematology
Time frame: Up to 187 weeks
Number of Patients With Grade 3/4 on Clinical Assessments - Clinical Chemistry
Time frame: 187 weeks
Notable Vital Sign Values During the Study Period - Pediatric Patients
Time frame: End of study (up to week 187)
Notable Vital Sign Values During the Study Period - Adult Patients
Time frame: End of study (up to week 187)
Number of Participants With Notable ECG Values.
Time frame: Up to week 187
Growth and Development in Pediatric Population
Time frame: Week 24 or 6 months (± 4 weeks)
Overview of Number of Patients With Adverse Events (AEs)
Time frame: Up to 187 weeks
Results and safety
Loading the posted results from ClinicalTrials.gov…
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 9 Feb 2023.
- Posted resultsParticipant flow, baseline, all outcome measures and adverse events.
- Derived from this study: PubMed 38112724Fujino A, Kuniyeda K, Nozaki T, Ozeki M, Ohyama T, Sato I, Kamibeppu K, Tanaka A, Uemura N, Kanmuri K, Nakamura K, Kobayashi F, Suenobu S, Nomura T, Hayashi A, Nagao M, Kato A, Aramaki-Hattori N, Imagawa K, Ishikawa K, Ochi J, Horiuchi S, Nagabukuro H. The Prospective Natural History Study of Patients with Intractable Venous Malformation and Klippel-Trenaunay Syndrome to Guide Designing a Proof-of-Concept Clinical Trial for Novel Therapeutic Intervention. Lymphat Res Biol. 2024 Feb;22(1):27-36. doi: 10.1089/lrb.2023.0023. Epub 2023 Dec 19.
- Derived from this study: PubMed 37634128Canaud G, Lopez Gutierrez JC, Irvine AD, Vabres P, Hansford JR, Ankrah N, Branle F, Papadimitriou A, Ridolfi A, O'Connell P, Turner S, Adams DM. Alpelisib for treatment of patients with PIK3CA-related overgrowth spectrum (PROS). Genet Med. 2023 Dec;25(12):100969. doi: 10.1016/j.gim.2023.100969. Epub 2023 Aug 24.
- Derived from this study: PubMed 37624421Singh S, Bradford D, Li X, Mishra-Kalyani PS, Shen YL, Wang L, Zhao H, Xiong Y, Liu J, Charlab R, Kraft J, Khasar S, Miller CP, Rivera DR, Kluetz PG, Pazdur R, Beaver JA, Singh H, Donoghue M. FDA Approval Summary: Alpelisib for PIK3CA-Related Overgrowth Spectrum. Clin Cancer Res. 2024 Jan 5;30(1):23-28. doi: 10.1158/1078-0432.CCR-23-1270.
- Individual participant dataSharing planned: No
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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.
Novartis Pharmaceuticals study director
Novartis Pharmaceuticals
7 sites in 5 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of PIK3CA-Related Overgrowth Spectrum (PROS), run by Novartis Pharmaceuticals at 7 sites in 5 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 7 inclusion and 0 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 Feb 2023. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 7 sites in France, United States, Australia, Ireland, Spain. 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?
Yes. Results are posted in the registry (first posted 9 Feb 2023). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.
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?
Percentage of Patients Responders and Non-responders at Week 24 (time frame: Index date and week 24 or 6 months (± 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 NCT04285723, which also lists 3 linked publications.
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 Feb 2023.