Defective MineralizationBioHypophosNCT02603042
Biomarker for Hypophosphatasia Disease (BioHypophos)
An observational study of Defective Mineralization, run by CENTOGENE GmbH Rostock at 3 sites in 3 countries.
Trial summary
Development of a new MS-based biomarker for the early and sensitive diagnosis of Hypophosphatasia disease from plasma Read more about this study
- Who is it for?
- Ages 2 months and older
- Conditions the study is for
- Defective Mineralization
- How many people
- 0 participants
- Where
- 3 sitesin 3 countries
- Study dates
- 20 Aug 2018to 28 Feb 2021
- 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 2 months and older
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Study population: Patients with Hypophosphatasia disease or high-grade suspicion for Hypophosphatasia disease
Who may be able to join
None listed.
Who cannot join
- No Informed consent from the patient or the parents before any study related procedures.
- Patients of both gender younger than 2 month
- No diagnosis of Hypophosphatasia disease or no valid criteria for profound suspicion of Hypophosphatasia disease
Trial locations and contacts
3 sites in 3 countries.
3 sites in 3 countries
India1 site
NIRMAN Navi Mumbai Institute of Research In Mental And Neurological Handicap/Pediatric Geneticist
Mumbai, 400705
About this study
Official title: Biomarker for Hypophosphatasia Disease AN INTERNATIONAL, MULTICENTER, EPIDEMIOLOGICAL PROTOCOL
Development of a new MS-based biomarker for the early and sensitive diagnosis of Hypophosphatasia disease from plasma
Read the detailed description
Hypophosphatasia (HPP) is a rare genetic disorder characterized the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization, the process by which bones and teeth take up minerals such as calcium and phosphorus. These minerals are required for proper hardness and strength. Defective mineralization results in bones that are soft and prone to fracture and deformity. Defective mineralization of teeth can lead to premature tooth loss. The specific symptoms can vary greatly from one person to another, sometimes even among members of the same family. There are five major clinical forms of HPP that range from an extremely severe form that can cause stillbirth to a form associated with only premature loss of baby (deciduous) teeth, but no bone abnormalities. Hypophosphatasia is caused by mutations in the tissue non-specific alkaline phosphatase (ALPL) gene. This gene is also known as the TNSALP gene. Such mutations lead to low levels of the tissue nonspecific alkaline phosphatase enzyme. Depending on the specific form, hypophosphatasia can be inherited in an autosomal recessive or autosomal dominant manner.
Hypophosphatasia is an extremely variable disorder. Five major clinical forms have been identified based primarily upon the age of onset of symptoms and diagnosis. These are known as perinatal, infantile, childhood, adult, and odontohypophosphatasia. Generally, the severity of these different forms of hypophosphatasia correlates to the residual alkaline phosphate activity in the body, with less enzyme activity causing more severe dis- ease. Because hypophosphatasia is a highly variable disorder, it is important to note that affected individuals may not have all of the symptoms and that every individual case is unique. Some children will develop severe complications early in life; others have mild disease that may improve during young adult life.
Perinatal hypophosphatasia is associated with profound inactivity of alkaline phosphatase and markedly impaired mineralization. Consequently, the skeleton fails to form properly in the womb. Specific skeletal malformations may vary, but short, bowed arms and legs and underdeveloped ribs often occur. Some pregnancies end in stillbirth. In other cases, affected newborns survive for several days, but pass away from respiratory failure due to deformities of the chest and underdeveloped lungs.
Infantile hypophosphatasia may have no noticeable abnormalities at birth, but symptoms may become apparent at any time within the first six months. The initial symptom may be the failure to gain weight and grow at the expected rate for age and gender referred to as "failure to thrive." Some affected babies later exhibit early fusion of the bones of the skull (craniosynostosis), which can result in the head appearing disproportionately wide (brachycephaly). Craniosynostosis may be associated with increased pressure of the cerebrospinal fluid, a condition known as "intracranial hypertension." This complication can cause headaches, swelling of the optic disk (papilledema), and bulging of the eyes (proptosis). Affected infants have softened, weakened bones that lead to the skeletal malformations of rickets. Rickets is a bone disease that occurs during growth with softening of bone and characteristic bowing deformities of the legs from growth plate abnormalities. Enlarged wrist and ankle joints may occur. Affected infants may also have deformities in the chest and ribs and rib fractures, predisposing them to pneumonia. Varying degrees of pulmonary insufficiency and breathing difficulties may develop, potentially progressing to life-threatening respiratory failure. Episodes of fever and bone pain, or tender bones may occur. Some infants exhibit diminished muscle tone (hypotonia) so that a baby appears "floppy" as well as elevated levels of calcium in the blood (hypercalcemia). Hypercalcemia can cause vomiting, constipation, weakness, and poor feeding. In rare cases, vitamin B6-dependent seizures may occur. Increased excretion of calcium may lead to kidney (renal) damage. Sometimes there is spontaneous improvement in mineralization during early childhood, with the exception of craniosynostosis. Short stature and skeletal deformities may persist lifelong.
Childhood hypophosphatasia is highly variable, but is less severe than the infantile form. Affected children may sometimes have craniosynostosis and exhibit signs of intra- cranial hypertension. Skeletal malformations that resemble rickets may become apparent at 2 to 3 years of age. Bone and joint pain and fractures may occur. Baby teeth may fall out earlier than normal. Some children are weak and experience delays in walking, and when they do learn to walk may have a distinct, waddling gait. Spontaneous remission of bone symptoms has been reported in young adult life, but such symptoms can recur during middle age or late adulthood.
Adult hypophosphatasia is characterized by a wide variety of symptoms. Affected individuals have osteomalacia, a softening of the bones in adults. Some individuals have a history of rickets during childhood, or have experienced premature loss of their baby teeth. Individuals with adult hypophosphatasia can experience fractures, especially stress fractures in the feet or pseudofractures of the thigh. Repeated fractures can result in chronic pain and debility. Fractures of the spine seem less common, but also occur. Bone pain is a common complication. Some affected adults develop joint inflammation and pain near or around certain joints due to the accumulation of calcium crystals (calcific periarthritis) or a condition called chondrocalcinosis, characterized by the accumulation of calcium crystals within the cartilage of joints, sometimes damaging the joint. Others have sudden, severe pain in the joint (pseudo gout). Affected adults may experience loss of adult teeth.
Odontohypophosphatasia is characterized by the premature loss of teeth in childhood, or loss of teeth in adulthood. It is an isolated finding that does not occur along with the characteristic bone symptoms of other forms of hypophosphatasia.
For hypophosphatasia, mutations in the ALPL gene can be inherited in an autosomal recessive or autosomal dominant manner. The perinatal and infantile forms of HPP are inherited in an autosomal recessive manner. The childhood form can be autosomal recessive or autosomal dominant. The adult form and odontohypophosphatasia typically are autosomal dominant disorders, but in rare cases can be inherited as an autosomal recessive trait.
A diagnosis of hypophosphatasia is based upon identification of characteristic signs and symptoms, a detailed patient history, a thorough clinical evaluation, and a variety of laboratory tests including x-ray studies. Proper diagnosis of hypophosphatasia is easy for physicians who are familiar or experienced with this disorder.
New methods, like mass-spectrometry give a good chance to characterize specific metabolic alterations in the blood (plasma) of affected patients that allow diagnosing in the future the disease earlier, with a higher sensitivity and specificity.
Therefore it is the goal of the study to identify and validate a new biochemical marker from the plasma of the affected patients helping to benefit other patients by an early diagnose and thereby with an earlier treatment.
- Conditions
- Defective Mineralization
- Keywords
- Hypophosphatasia Disease, Biomarker
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 |
|---|---|---|
| Observation | Patients with Hypophosphatasia disease or high-grade suspicion for Hypophosphatasia disease |
What is being measured
The primary outcome is the main question the study is designed to answer.
Sequencing of the Hypophosphatasia disease related gene
Next-Generation Sequencing (NGS) of the ALPL gene will be performed. The mutation will be confirmed by Sanger sequencing.
Measured: 4 weeks
Secondary outcomes (1)
The Hypophosphatasia disease specific biomarker candidates finding
The quantitative determination of small molecules (molecular weight 150-700 kD, given as ng/μl) within a dried blood spot sample will be validated via liquid chromatography multiple reaction-monitoring mass spectrometry (LC/MRM-MS) and compared with a merged control cohort. The statistically best validated molecule will be considered as a disease specific biomarker.
Measured: 24 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted11 Nov 2015 (estimated)
- Study start20 Aug 2018
- Primary completion28 Feb 2021
- Study completion28 Feb 2021
Why it stopped: Transition to BioMetabol
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Defective MineralizationStudies 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
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 0 participants (actual)
Sponsor and investigators
- Lead sponsor
- CENTOGENE GmbH Rostock
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02603042
- Sponsor's protocol ID
- BHP 06-2018
- Acronym
- BioHypophos
- Status last verified
- Feb 2023
- First submitted
- 10 Nov 2015
- Last updated
- 13 Feb 2023
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 13 Feb 2023. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Biomarker for Hypophosphatasia Disease AN INTERNATIONAL, MULTICENTER, EPIDEMIOLOGICAL PROTOCOL
- ClinicalTrials.gov ID
- NCT02603042
- Acronym / sponsor ID
- BioHypophos / BHP 06-2018
- Conditions
- Defective Mineralization
- Keywords
- Hypophosphatasia Disease, Biomarker
- Study type
- Observational
- Recruitment status
- WithdrawnReason stopped: Transition to BioMetabol
- Enrolment
- 0 participants (actual)
- Lead sponsor
- CENTOGENE GmbH RostockIndustry (pharma, biotech, devices)
- Study start
- 20 Aug 2018 (actual)
- Primary completion
- 28 Feb 2021 (actual)
- Study completion
- 28 Feb 2021 (actual)
- First posted
- 11 Nov 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.
Development of a new MS-based biomarker for the early and sensitive diagnosis of Hypophosphatasia disease from plasma
Detailed description
Hypophosphatasia (HPP) is a rare genetic disorder characterized the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization, the process by which bones and teeth take up minerals such as calcium and phosphorus. These minerals are required for proper hardness and strength. Defective mineralization results in bones that are soft and prone to fracture and deformity. Defective mineralization of teeth can lead to premature tooth loss. The specific symptoms can vary greatly from one person to another, sometimes even among members of the same family. There are five major clinical forms of HPP that range from an extremely severe form that can cause stillbirth to a form associated with only premature loss of baby (deciduous) teeth, but no bone abnormalities. Hypophosphatasia is caused by mutations in the tissue non-specific alkaline phosphatase (ALPL) gene. This gene is also known as the TNSALP gene. Such mutations lead to low levels of the tissue nonspecific alkaline phosphatase enzyme. Depending on the specific form, hypophosphatasia can be inherited in an autosomal recessive or autosomal dominant manner.
Hypophosphatasia is an extremely variable disorder. Five major clinical forms have been identified based primarily upon the age of onset of symptoms and diagnosis. These are known as perinatal, infantile, childhood, adult, and odontohypophosphatasia. Generally, the severity of these different forms of hypophosphatasia correlates to the residual alkaline phosphate activity in the body, with less enzyme activity causing more severe dis- ease. Because hypophosphatasia is a highly variable disorder, it is important to note that affected individuals may not have all of the symptoms and that every individual case is unique. Some children will develop severe complications early in life; others have mild disease that may improve during young adult life.
Perinatal hypophosphatasia is associated with profound inactivity of alkaline phosphatase and markedly impaired mineralization. Consequently, the skeleton fails to form properly in the womb. Specific skeletal malformations may vary, but short, bowed arms and legs and underdeveloped ribs often occur. Some pregnancies end in stillbirth. In other cases, affected newborns survive for several days, but pass away from respiratory failure due to deformities of the chest and underdeveloped lungs.
Infantile hypophosphatasia may have no noticeable abnormalities at birth, but symptoms may become apparent at any time within the first six months. The initial symptom may be the failure to gain weight and grow at the expected rate for age and gender referred to as "failure to thrive." Some affected babies later exhibit early fusion of the bones of the skull (craniosynostosis), which can result in the head appearing disproportionately wide (brachycephaly). Craniosynostosis may be associated with increased pressure of the cerebrospinal fluid, a condition known as "intracranial hypertension." This complication can cause headaches, swelling of the optic disk (papilledema), and bulging of the eyes (proptosis). Affected infants have softened, weakened bones that lead to the skeletal malformations of rickets. Rickets is a bone disease that occurs during growth with softening of bone and characteristic bowing deformities of the legs from growth plate abnormalities. Enlarged wrist and ankle joints may occur. Affected infants may also have deformities in the chest and ribs and rib fractures, predisposing them to pneumonia. Varying degrees of pulmonary insufficiency and breathing difficulties may develop, potentially progressing to life-threatening respiratory failure. Episodes of fever and bone pain, or tender bones may occur. Some infants exhibit diminished muscle tone (hypotonia) so that a baby appears "floppy" as well as elevated levels of calcium in the blood (hypercalcemia). Hypercalcemia can cause vomiting, constipation, weakness, and poor feeding. In rare cases, vitamin B6-dependent seizures may occur. Increased excretion of calcium may lead to kidney (renal) damage. Sometimes there is spontaneous improvement in mineralization during early childhood, with the exception of craniosynostosis. Short stature and skeletal deformities may persist lifelong.
Childhood hypophosphatasia is highly variable, but is less severe than the infantile form. Affected children may sometimes have craniosynostosis and exhibit signs of intra- cranial hypertension. Skeletal malformations that resemble rickets may become apparent at 2 to 3 years of age. Bone and joint pain and fractures may occur. Baby teeth may fall out earlier than normal. Some children are weak and experience delays in walking, and when they do learn to walk may have a distinct, waddling gait. Spontaneous remission of bone symptoms has been reported in young adult life, but such symptoms can recur during middle age or late adulthood.
Adult hypophosphatasia is characterized by a wide variety of symptoms. Affected individuals have osteomalacia, a softening of the bones in adults. Some individuals have a history of rickets during childhood, or have experienced premature loss of their baby teeth. Individuals with adult hypophosphatasia can experience fractures, especially stress fractures in the feet or pseudofractures of the thigh. Repeated fractures can result in chronic pain and debility. Fractures of the spine seem less common, but also occur. Bone pain is a common complication. Some affected adults develop joint inflammation and pain near or around certain joints due to the accumulation of calcium crystals (calcific periarthritis) or a condition called chondrocalcinosis, characterized by the accumulation of calcium crystals within the cartilage of joints, sometimes damaging the joint. Others have sudden, severe pain in the joint (pseudo gout). Affected adults may experience loss of adult teeth.
Odontohypophosphatasia is characterized by the premature loss of teeth in childhood, or loss of teeth in adulthood. It is an isolated finding that does not occur along with the characteristic bone symptoms of other forms of hypophosphatasia.
For hypophosphatasia, mutations in the ALPL gene can be inherited in an autosomal recessive or autosomal dominant manner. The perinatal and infantile forms of HPP are inherited in an autosomal recessive manner. The childhood form can be autosomal recessive or autosomal dominant. The adult form and odontohypophosphatasia typically are autosomal dominant disorders, but in rare cases can be inherited as an autosomal recessive trait.
A diagnosis of hypophosphatasia is based upon identification of characteristic signs and symptoms, a detailed patient history, a thorough clinical evaluation, and a variety of laboratory tests including x-ray studies. Proper diagnosis of hypophosphatasia is easy for physicians who are familiar or experienced with this disorder.
New methods, like mass-spectrometry give a good chance to characterize specific metabolic alterations in the blood (plasma) of affected patients that allow diagnosing in the future the disease earlier, with a higher sensitivity and specificity.
Therefore it is the goal of the study to identify and validate a new biochemical marker from the plasma of the affected patients helping to benefit other patients by an early diagnose and thereby with an earlier treatment.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Observation | – | –Patients with Hypophosphatasia disease or high-grade suspicion for Hypophosphatasia disease |
Who may qualify
- Ages
- 2 months and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Patients with Hypophosphatasia disease or high-grade suspicion for Hypophosphatasia disease
Key inclusion criteria (0 listed)
Key exclusion criteria (3 listed)
- No Informed consent from the patient or the parents before any study related procedures.
- Patients of both gender younger than 2 month
- No diagnosis of Hypophosphatasia disease or no valid criteria for profound suspicion of Hypophosphatasia disease
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
Sequencing of the Hypophosphatasia disease related gene
Time frame: 4 weeks
Next-Generation Sequencing (NGS) of the ALPL gene will be performed. The mutation will be confirmed by Sanger sequencing.
1 secondary outcome
The Hypophosphatasia disease specific biomarker candidates finding
Time frame: 24 months
Results and safety
The study was withdrawn before enrolling participants, so there are no results.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 13 Feb 2023.
- Centogene is one of the leading laboratories focusing on genetic testing for rare hereditary disorders. We now offer more than 2200 routine genetic and biochemical tests.Link provided by the sponsor.
- Individual participant dataSharing planned: Undecided
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.
The record lists no contact. Use the official record to reach the sponsor.
3 sites in 3 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Defective Mineralization, run by CENTOGENE GmbH Rostock at 3 sites in 3 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 0 inclusion and 3 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: withdrawn, as of the sponsor's last update on 13 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 3 sites in Germany, India, Sri Lanka. 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 was withdrawn before enrolling participants, so there are no results.
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?
Sequencing of the Hypophosphatasia disease related gene (time frame: 4 weeks). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
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 13 Feb 2023.