Familial HypercholesterolemiaNCT02778646
Detection of Familial Hypercholesterolaemia in Cardiovascular Disease Registry
An observational study of Familial Hypercholesterolemia and Cardiac Event, run by University College, London.
Trial summary
Familial hypercholesterolaemia (FH) is an autosomal dominant somatic mutation commonly located on the LDL-receptor, APOB, and PCKS9 gene. The estimated prevalence of homozygous FH is estimated at 1 in a million, whereas the prevalence of heterozygous FH ranges from 1/500-1/200 (0.2-0.5%) of the general population. Read more about this study
- Who is it for?
- Ages 18 to 59 years
- Conditions the study is for
- Familial Hypercholesterolemia, Cardiac Event, Percutaneous Coronary Intervention
- How many people
- 1,622,948 participants
- Where
- No sites listed yet
- Study dates
- Jan 2003to Dec 2014
- How long will I take part?
- 10 Years
- 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 18 to 59 years
- All sexes
- No healthy volunteers
- Adult
Study population: UK based clinical population (participating hospitals across England and Wales).
Who may be able to join
- Experienced a cardiac event and is therefore entered in CVD audit
- First registered event within audits
Who cannot join
- Under age 18
- Previous diagnosis of FH
About this study
Official title: Detection of Familial Hypercholesterolaemia Within United Kingdom Based National Disease Registries: A National Institute for Cardiovascular Outcomes Research (NICOR) Study
Familial hypercholesterolaemia (FH) is an autosomal dominant somatic mutation commonly located on the LDL-receptor, APOB, and PCKS9 gene. The estimated prevalence of homozygous FH is estimated at 1 in a million, whereas the prevalence of heterozygous FH ranges from 1/500-1/200 (0.2-0.5%) of the general population. The majority of individuals suffering from FH remain undiagnosed and without treatment. Using preexisting clinical guidelines, this study scored patients within national cardiovascular disease (CVD) registries for FH with the aim of evaluating prevalence of FH among individuals suffering from premature cardiac events within the UK.
Following scoring of the registry, this study also examined the relationship between cholesterol and survival after a premature event in order to understand the possible ramifications of untreated FH on patient survival.
Read the detailed description
Familial Hypercholesterolaemia (FH) is a genetic disorder caused by a mutation in the low-density lipoprotein receptor (LDL-R) gene. Individuals suffering from FH experience elevated cholesterol levels that are outside of the accepted range of healthy cholesterol levels. When left untreated FH may cause complications in cardiovascular health and may cause premature cardiac events. Current screening methods for this disease do not successfully diagnose the majority of FH cases.
This study applies three clinical diagnostic tools--Dutch Lipid Clinic Network Criteria (DLCN-Criteria), Make Early Diagnosis to Prevent Early Deaths (MEDPED) criteria, and the Simon Broome Register Criteria--within national registries in order to define possible, probable, and definite cases of FH. The national registries used for this study are the Myocardial Ischaemia National Audit Project (MINAP) and National Audit of Percutaneous Coronary Intervention (BCIS) audit.
Following scoring of patients, a one-year and 30-day survival model were created in order to assess the effect of elevated cholesterol on survival, as suspected FH patients will have elevated cholesterol levels.
Data within MINAP ranges from 2003-2013 and data from BCIS ranges from 2007-2014.
Patient information within the audits was collected following admission to English and Welsh hospitals following a coronary event or percutaneous coronary intervention (PCI). Information related to survival and mortality was collected annually within each audit.
Participants for this study were those experiencing a premature cardiovascular event or coronary intervention (men <55 and women<60).
- Medical subject headings
- Hyperlipoproteinemia Type II, Cardiovascular Diseases
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| MINAP Audit | Individuals within this group are those that have been admitted into a United Kingdom (UK) based hospital following a major cardiac event. The FH status of individuals within this group is unknown. | |
| BCIS Audit | Individuals within this group are those who have undergone percutaneous coronary intervention in the United Kingdom (UK). The FH status of individuals within this group is unknown. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Cholesterol (mmol/L)
The primary outcome of this study is elevation of cholesterol due to suspected FH.
Patients within either audit have experienced a major coronary event which is defined as: Myocardial Infarction (NSTEMI/STEMI), coronary artery bypass graft (CABG), aortic surgery, valve replacements/repairs, and percutaneous coronary intervention (PCI).
This study is interested in detection of familial hypercholesterolaemia (FH) amongst patients experiencing a premature cardiac event. One of the key indicators of familial hypercholesterolaemia is elevated cholesterol.
After hospital admission, a patient's cholesterol measurements will be taken within the first 24 hours. This is the only cholesterol measurement that is collected within the audit, as it does not fluctuate due to cholesterol depression post-event, and is potentially more indicative or a patient's cholesterol history (especially in situations where a patient has no prior history of statins).
Measured: Within 24 hours of Hospital Admission
Survival Following Hospital Admission for a Major Coronary Event
Untreated familial hypercholesterolaemia--and as a result elevated cholesterol--may lead to premature death from coronary heart disease (CHD).
Another primary outcome of this study is patient survival following hospital admission for a premature cardiac event.
Measured: Up to 10 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted20 May 2016 (estimated)
- Study startJan 2003
- Primary completionDec 2014
- Study completionDec 2014
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (50)Papers the sponsor has linked to this study.
- Other trials for Familial HypercholesterolemiaStudies of the same condition, open and under way.
- More trials run by University College, LondonThe 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
- Cross-sectional
- Enrolment
- 1,622,948 participants (actual)
- Target duration
- 10 Years
Sponsor and investigators
- Lead sponsor
- University College, London
- Sponsor type
- University, hospital or other
- Collaborators
- Aegerion Pharmaceuticals, Inc.
- Responsible party
- Sponsor
- Investigators
- Joy Ayemoba, MSc, Study chair, UCLJohn Deanfield, MD, Principal investigator, UCLOwen Nicholas, PhD, Study director, UCLRiyaz Patel, MD, Study chair, UCL
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02778646
- Sponsor's protocol ID
- NCR-15-07
- Status last verified
- Jul 2015
- First submitted
- 12 May 2016
- Last updated
- 20 May 2016
- Results posted
- No
Publications
Bell DA, Kirke AB, Barbour R, Southwell L, Pang J, Burrows S, Watts GF. Can patients be accurately assessed for familial hypercholesterolaemia in primary care? Heart Lung Circ. 2014 Dec;23(12):1153-7. doi: 10.1016/j.hlc.2014.06.015. Epub 2014 Jul 5.
PubMed 25065543Chen CX, Hay JW. Cost-effectiveness analysis of alternative screening and treatment strategies for heterozygous familial hypercholesterolemia in the United States. Int J Cardiol. 2015 Feb 15;181:417-24. doi: 10.1016/j.ijcard.2014.12.070. Epub 2014 Dec 24.
PubMed 25569270Futema M, Kumari M, Boustred C, Kivimaki M, Humphries SE. Would raising the total cholesterol diagnostic cut-off from 7.5 mmol/L to 9.3 mmol/L improve detection rate of patients with monogenic familial hypercholesterolaemia? Atherosclerosis. 2015 Apr;239(2):295-8. doi: 10.1016/j.atherosclerosis.2015.01.028. Epub 2015 Jan 28.
PubMed 25682026Goldberg AC, Hopkins PN, Toth PP, Ballantyne CM, Rader DJ, Robinson JG, Daniels SR, Gidding SS, de Ferranti SD, Ito MK, McGowan MP, Moriarty PM, Cromwell WC, Ross JL, Ziajka PE. Familial hypercholesterolemia: screening, diagnosis and management of pediatric and adult patients: clinical guidance from the National Lipid Association Expert Panel on Familial Hypercholesterolemia. J Clin Lipidol. 2011 May-Jun;5(3):133-140. doi: 10.1016/j.jacl.2011.03.001. Epub 2011 Mar 11.
PubMed 21600517Gray J, Jaiyeola A, Whiting M, Modell M, Wierzbicki AS. Identifying patients with familial hypercholesterolaemia in primary care: an informatics-based approach in one primary care centre. Heart. 2008 Jun;94(6):754-8. doi: 10.1136/hrt.2006.107391. Epub 2007 Jun 17.
PubMed 17575326Haralambos K, Whatley SD, Edwards R, Gingell R, Townsend D, Ashfield-Watt P, Lansberg P, Datta DB, McDowell IF. Clinical experience of scoring criteria for Familial Hypercholesterolaemia (FH) genetic testing in Wales. Atherosclerosis. 2015 May;240(1):190-6. doi: 10.1016/j.atherosclerosis.2015.03.003. Epub 2015 Mar 6.
PubMed 25797312Kirke AB, Barbour RA, Burrows S, Bell DA, Vickery AW, Emery J, Watts GF. Systematic detection of familial hypercholesterolaemia in primary health care: a community based prospective study of three methods. Heart Lung Circ. 2015 Mar;24(3):250-6. doi: 10.1016/j.hlc.2014.09.011. Epub 2014 Sep 30.
PubMed 25445428Kirke A, Watts GF, Emery J. Detecting familial hypercholesterolaemia in general practice. Aust Fam Physician. 2012 Dec;41(12):965-8.
PubMed 23210121Nair DR, Sharifi M, Al-Rasadi K. Familial hypercholesterolaemia. Curr Opin Cardiol. 2014 Jul;29(4):381-8. doi: 10.1097/HCO.0000000000000083.
PubMed 24870549Nice.org.uk,. 'Identification And Management Of Familial Hypercholesterolaemia | Guidance And Guidelines | NICE'. N.p., 2008. Web. 27 Apr. 2015.
Watts GF, Shaw JE, Pang J, Magliano DJ, Jennings GL, Carrington MJ. Prevalence and treatment of familial hypercholesterolaemia in Australian communities. Int J Cardiol. 2015 Apr 15;185:69-71. doi: 10.1016/j.ijcard.2015.03.027. Epub 2015 Mar 3. No abstract available.
PubMed 25791093Weng SF, Kai J, Andrew Neil H, Humphries SE, Qureshi N. Improving identification of familial hypercholesterolaemia in primary care: derivation and validation of the familial hypercholesterolaemia case ascertainment tool (FAMCAT). Atherosclerosis. 2015 Feb;238(2):336-43. doi: 10.1016/j.atherosclerosis.2014.12.034. Epub 2014 Dec 20.
PubMed 25555265Arnold SV, Kosiborod M, Tang F, Zhao Z, McCollam PL, Birt J, Spertus JA. Changes in low-density lipoprotein cholesterol levels after discharge for acute myocardial infarction in a real-world patient population. Am J Epidemiol. 2014 Jun 1;179(11):1293-300. doi: 10.1093/aje/kwu060. Epub 2014 Apr 16.
PubMed 24743066Austin MA, Hutter CM, Zimmern RL, Humphries SE. Genetic causes of monogenic heterozygous familial hypercholesterolemia: a HuGE prevalence review. Am J Epidemiol. 2004 Sep 1;160(5):407-20. doi: 10.1093/aje/kwh236.
PubMed 15321837Barth JH, Jackson BM, Farrin AJ, Efthymiou M, Worthy G, Copeland J, Bailey KM, Romaine SP, Balmforth AJ, McCormack T, Whitehead A, Flather MD, Nixon J, Hall AS; SPACE ROCKET Trial Group. Change in serum lipids after acute coronary syndromes: secondary analysis of SPACE ROCKET study data and a comparative literature review. Clin Chem. 2010 Oct;56(10):1592-8. doi: 10.1373/clinchem.2010.145631. Epub 2010 Aug 20.
PubMed 20729301
Study at a glance
From the registry record, last updated by the sponsor on 20 May 2016. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Detection of Familial Hypercholesterolaemia Within United Kingdom Based National Disease Registries: A National Institute for Cardiovascular Outcomes Research (NICOR) Study
- ClinicalTrials.gov ID
- NCT02778646
- Acronym / sponsor ID
- NCR-15-07
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 1,622,948 participants (actual)
- Lead sponsor
- University College, LondonUniversity, hospital or other
- Collaborators
- Aegerion Pharmaceuticals, Inc.
- Study start
- Jan 2003
- Primary completion
- Dec 2014 (actual)
- Study completion
- Dec 2014 (actual)
- First posted
- 20 May 2016 (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.
Familial hypercholesterolaemia (FH) is an autosomal dominant somatic mutation commonly located on the LDL-receptor, APOB, and PCKS9 gene. The estimated prevalence of homozygous FH is estimated at 1 in a million, whereas the prevalence of heterozygous FH ranges from 1/500-1/200 (0.2-0.5%) of the general population. The majority of individuals suffering from FH remain undiagnosed and without treatment. Using preexisting clinical guidelines, this study scored patients within national cardiovascular disease (CVD) registries for FH with the aim of evaluating prevalence of FH among individuals suffering from premature cardiac events within the UK.
Following scoring of the registry, this study also examined the relationship between cholesterol and survival after a premature event in order to understand the possible ramifications of untreated FH on patient survival.
Detailed description
Familial Hypercholesterolaemia (FH) is a genetic disorder caused by a mutation in the low-density lipoprotein receptor (LDL-R) gene. Individuals suffering from FH experience elevated cholesterol levels that are outside of the accepted range of healthy cholesterol levels. When left untreated FH may cause complications in cardiovascular health and may cause premature cardiac events. Current screening methods for this disease do not successfully diagnose the majority of FH cases.
This study applies three clinical diagnostic tools--Dutch Lipid Clinic Network Criteria (DLCN-Criteria), Make Early Diagnosis to Prevent Early Deaths (MEDPED) criteria, and the Simon Broome Register Criteria--within national registries in order to define possible, probable, and definite cases of FH. The national registries used for this study are the Myocardial Ischaemia National Audit Project (MINAP) and National Audit of Percutaneous Coronary Intervention (BCIS) audit.
Following scoring of patients, a one-year and 30-day survival model were created in order to assess the effect of elevated cholesterol on survival, as suspected FH patients will have elevated cholesterol levels.
Data within MINAP ranges from 2003-2013 and data from BCIS ranges from 2007-2014.
Patient information within the audits was collected following admission to English and Welsh hospitals following a coronary event or percutaneous coronary intervention (PCI). Information related to survival and mortality was collected annually within each audit.
Participants for this study were those experiencing a premature cardiovascular event or coronary intervention (men <55 and women<60).
Study design
- Observational model
- Cohort
- Time perspective
- Cross-sectional
- Target follow-up
- 10 Years
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| MINAP Audit | – | –Individuals within this group are those that have been admitted into a United Kingdom (UK) based hospital following a major cardiac event. The FH status of individuals within this group is unknown. |
| BCIS Audit | – | –Individuals within this group are those who have undergone percutaneous coronary intervention in the United Kingdom (UK). The FH status of individuals within this group is unknown. |
Who may qualify
- Ages
- 18 to 59 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult
- Study population
- UK based clinical population (participating hospitals across England and Wales).
Key inclusion criteria (2 listed)
- Experienced a cardiac event and is therefore entered in CVD audit
- First registered event within audits
Key exclusion criteria (2 listed)
- Under age 18
- Previous diagnosis of FH
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Cholesterol (mmol/L)
Time frame: Within 24 hours of Hospital Admission
The primary outcome of this study is elevation of cholesterol due to suspected FH. Patients within either audit have experienced a major coronary event which is defined as: Myocardial Infarction (NSTEMI/STEMI), coronary artery bypass graft (CABG), aortic surgery, valve replacements/repairs, and percutaneous coronary intervention (PCI). This study is interested in detection of familial hypercholesterolaemia (FH) amongst patients experiencing a premature cardiac event. One of the key indicators of familial hypercholesterolaemia is elevated cholesterol. After hospital admission, a patient's cholesterol measurements will be taken within the first 24 hours. This is the only cholesterol measurement that is collected within the audit, as it does not fluctuate due to cholesterol depression post-event, and is potentially more indicative or a patient's cholesterol history (especially in situations where a patient has no prior history of statins).
Survival Following Hospital Admission for a Major Coronary Event
Time frame: Up to 10 years
Untreated familial hypercholesterolaemia--and as a result elevated cholesterol--may lead to premature death from coronary heart disease (CHD). Another primary outcome of this study is patient survival following hospital admission for a premature cardiac event.
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 20 May 2016.
- Background: PubMed 25065543Bell DA, Kirke AB, Barbour R, Southwell L, Pang J, Burrows S, Watts GF. Can patients be accurately assessed for familial hypercholesterolaemia in primary care? Heart Lung Circ. 2014 Dec;23(12):1153-7. doi: 10.1016/j.hlc.2014.06.015. Epub 2014 Jul 5.
- Background: PubMed 25569270Chen CX, Hay JW. Cost-effectiveness analysis of alternative screening and treatment strategies for heterozygous familial hypercholesterolemia in the United States. Int J Cardiol. 2015 Feb 15;181:417-24. doi: 10.1016/j.ijcard.2014.12.070. Epub 2014 Dec 24.
- Background: PubMed 25682026Futema M, Kumari M, Boustred C, Kivimaki M, Humphries SE. Would raising the total cholesterol diagnostic cut-off from 7.5 mmol/L to 9.3 mmol/L improve detection rate of patients with monogenic familial hypercholesterolaemia? Atherosclerosis. 2015 Apr;239(2):295-8. doi: 10.1016/j.atherosclerosis.2015.01.028. Epub 2015 Jan 28.
- Background: PubMed 21600517Goldberg AC, Hopkins PN, Toth PP, Ballantyne CM, Rader DJ, Robinson JG, Daniels SR, Gidding SS, de Ferranti SD, Ito MK, McGowan MP, Moriarty PM, Cromwell WC, Ross JL, Ziajka PE. Familial hypercholesterolemia: screening, diagnosis and management of pediatric and adult patients: clinical guidance from the National Lipid Association Expert Panel on Familial Hypercholesterolemia. J Clin Lipidol. 2011 May-Jun;5(3):133-140. doi: 10.1016/j.jacl.2011.03.001. Epub 2011 Mar 11.
- Background: PubMed 17575326Gray J, Jaiyeola A, Whiting M, Modell M, Wierzbicki AS. Identifying patients with familial hypercholesterolaemia in primary care: an informatics-based approach in one primary care centre. Heart. 2008 Jun;94(6):754-8. doi: 10.1136/hrt.2006.107391. Epub 2007 Jun 17.
- Background: PubMed 25797312Haralambos K, Whatley SD, Edwards R, Gingell R, Townsend D, Ashfield-Watt P, Lansberg P, Datta DB, McDowell IF. Clinical experience of scoring criteria for Familial Hypercholesterolaemia (FH) genetic testing in Wales. Atherosclerosis. 2015 May;240(1):190-6. doi: 10.1016/j.atherosclerosis.2015.03.003. Epub 2015 Mar 6.
- Background: PubMed 25445428Kirke AB, Barbour RA, Burrows S, Bell DA, Vickery AW, Emery J, Watts GF. Systematic detection of familial hypercholesterolaemia in primary health care: a community based prospective study of three methods. Heart Lung Circ. 2015 Mar;24(3):250-6. doi: 10.1016/j.hlc.2014.09.011. Epub 2014 Sep 30.
- Background: PubMed 23210121Kirke A, Watts GF, Emery J. Detecting familial hypercholesterolaemia in general practice. Aust Fam Physician. 2012 Dec;41(12):965-8.
- Background: PubMed 24870549Nair DR, Sharifi M, Al-Rasadi K. Familial hypercholesterolaemia. Curr Opin Cardiol. 2014 Jul;29(4):381-8. doi: 10.1097/HCO.0000000000000083.
- BackgroundNice.org.uk,. 'Identification And Management Of Familial Hypercholesterolaemia | Guidance And Guidelines | NICE'. N.p., 2008. Web. 27 Apr. 2015.
- Background: PubMed 25791093Watts GF, Shaw JE, Pang J, Magliano DJ, Jennings GL, Carrington MJ. Prevalence and treatment of familial hypercholesterolaemia in Australian communities. Int J Cardiol. 2015 Apr 15;185:69-71. doi: 10.1016/j.ijcard.2015.03.027. Epub 2015 Mar 3. No abstract available.
- Background: PubMed 25555265Weng SF, Kai J, Andrew Neil H, Humphries SE, Qureshi N. Improving identification of familial hypercholesterolaemia in primary care: derivation and validation of the familial hypercholesterolaemia case ascertainment tool (FAMCAT). Atherosclerosis. 2015 Feb;238(2):336-43. doi: 10.1016/j.atherosclerosis.2014.12.034. Epub 2014 Dec 20.
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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.
Joy Ayemoba, MSc study chair
UCL
John Deanfield, MD principal investigator
UCL
Owen Nicholas, PhD study director
UCL
Questions about this trial
What is this clinical trial studying?
An observational study of Familial Hypercholesterolemia and Cardiac Event, run by University College, London.
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 2 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 20 May 2016. Status can change between updates, so confirm with the study contact before making plans.
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?
Cholesterol (mmol/L) (time frame: Within 24 hours of Hospital Admission). The study lists 2 primary outcomes in all. 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 NCT02778646, which also lists 50 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 20 May 2016.