Oreana is a new genetic test that screens for genetic conditions which affect normal development in newborns, infants or young children. Oreana is a beneficial test for:
- Asymptomatic infants, for early identification of conditions which may not cause any symptoms initially and babies may not show any signs of illness. However, once symptoms begin, their damage may be irreparable and the health of the infant can deteriorate quickly, so early detection is beneficial.
- Symptomatic infants which have signs or symptoms of disease that can be diffcult to be clearly identified due to complexity or variability of symptoms. In these cases, Oreana could correctly identify the genetic change (mutation) responsible for the disease, and can lead to the affected child receiving the optimal treatment.
Most of the disorders included in Oreana are either treatable or have a simple management plan such as following dietary restrictions and taking prophylactic measures. When initiated early, symptoms can be prevented or their severity may be reduced, improving the prognosis and life expectancy of affected infants.
WHAT ARE THE BENEFITS OF Oreana NEONATAL SCREENING?
With Oreana, early detection of life-altering disorders can benefit the infant’s health and quality of life. The initial symptoms for many of these disorders include vomiting, lack of energy, breathing problems, feeding diffculties, and episodes of metabolic crises that require urgent care. Although treatment can begin when infants first start showing symptoms, which may be a few weeks or months after birth, their growth and development will already be impacted. Early detection and starting treatment as soon as possible is the most favourable way to prevent symptoms or minimise the impact of the condition.
Early detection can:
- Prevent or minimize symptoms
- Reduce the impact of the condition
- Reduce the time spent for diagnosis, and prevent a late diagnosis
- Permit early clinical interventions, treatment and management which will be more beneficial for the infant
- Enable potential participation of the infant in experimental therapies or clinical trials
WHY CHOOSE Oreana NEONATAL SCREENING?
Results are reported quickly, so if necessary, your baby can start beneficial treatment as soon as possible
Tests for disease-causing genetic changes (mutations), that cause serious health problems
Superior technology that yields accurate results
Non-invasive and painless for the infant
Complements newborn screening programs that test a smaller number of disorders
A MANAGEABLE CONDITION IS IDENTIFIED IN ABOUT 1 in 300 NEWBORNS*
Oreana neonatal screening can detect treatable or manageable conditions before appearance of symptoms. With early treatment and management, symptoms can be averted, and health problems can be minimized or prevented. Oreana can also be used for newborns, infants and children who show symptoms of a genetic disease which could be diffcult to identify. In these cases, Oreana can lead to the appropriate therapy that will benefit the affected child.
*Data collected from Centers for Disease Control and Prevention (2012); CDC Grand Rounds: Newborn screening and improved outcomes, and is based on screening of 29 diseases included in core conditions of the Recommended Uniform Screening Panel.
WHY PERFORM Oreana IN ADDITION TO NATIONAL NEWBORN SCREENING?
National newborn screening programs offer great advantages for infants, their families and national health systems. However, since they are subjected to each country’s regulations, the structure of the healthcare system and available funds, there are vast differences in the number of conditions each country tests for and in the technology they use to do so. As a result, countries throughout the world perform newborn ranging from only 2 disorders to over 35.
Oreana neonatal screening tests for 142 genes associated with genetic disorders that are either treatable or can benefit from early detection. Among others, Oreana tests for metabolic, endocrine, haemoglobin and hearing loss disorders, whose early detection and management can lead to therapeutic treatments that could reduce the severity of symptoms and improve the prognosis and life quality of the affected infant.
HOW IS TESTING PERFORMED?
Testing is quick and safe for your baby. A healthcare practitioner will use a specialized, soft swab to collect sample from the inside of the cheek of the infant, by moving it around in circular movements. The procedure is painless and is completed in a few seconds. The results will be reported back to your healthcare practitioner within 2-3 weeks of sample receipt.
WHEN IS THE IDEAL TIME FOR TESTING?
Your baby can get tested anytime after birth, up until early childhood. Ideally, the earlier the infant is tested, the sooner you will know whether they are affected, and start beneficial treatments that can prevent the onset of symptoms or minimize the impact of the disease.
WHAT DOES Oreana TEST FOR?
Oreana tests for 142 genes associated with genetic disorders that when detected early, can prevent or reduce serious consequences such as developmental delay, cognitive impairment, neurological and physical problems and premature death. The conditions tested may be inherited from carrier parents who are unaware of their carrier status to their children, or without a known or prior family history of that disorder.
METABOLIC DISORDERS
Lifelong dietary management is required. Early diagnosis and interventions can help prevent symptoms and improve prognosis.
ENDOCRINE DISORDERS
Early medical treatment and interventions can improve thyroid function, growth, development and metabolism. Lifelong treatment and follow-up by specialists is necessary.
HAEMOGLOBIN DISORDERS
Medical treatment, dietary management and transfusions are critical and needed lifelong.
HEARING LOSS DISORDERS
Hearing aids, cochlear implants or other services can help with creating the best management plan. Early interventions can improve the speech, language and social skills of affected children.
IMMUNODEFICIENCY, PULMONARY OR MUSCULOSKELETAL DISORDERS
Including Cystic Fibrosis, Severe Combined Immunodeficiences and Spinal Muscular Atrophy. Early detection is critical for prompt medical treatment, such as bone marrow transplantation, and better prognosis.
Oreana tests for 142 genes of Autosomal Recessive, Autosomal Dominant and X-Linked disorders. The disorders tested by Oreana are included in the 'Recommended Uniform Screening Panel', a list of disorders selected based upon the recommendations of the American College of Medical Genetics (ACMG) for newborn screening. Additional, clinically significant, manageable disorders were added to the Oreana panel.
HOW IS Oreana NEONATAL SCREENING PERFORMED?
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ASK YOUR PEDIATRICIAN ABOUT Oreana
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YOUR DOCTOR WILL COLLECT THE SAMPLE FROM YOUR BABY USING A CHEEK SWAB
THE SAMPLE WILL BE SENT TO NIPD Genetics
THE SAMPLE WILL BE ANALYZED IN OUR LABORATORY
RESULTS WILL BE SENT TO YOUR DOCTOR WITHIN 2-3 WEEKS OF SAMPLE RECEIPT IN THE LABORATORY
NIPD Genetics - Privacy Policy
General Statement
NIPD Genetics is a leading, innovative biotechnology company that designs, develops, and provides a broad spectrum of healthcare services to its customers through its expansive portfolio of molecular and clinical laboratory tests in all disciplines.
At NIPD Genetics we are committed to protecting and respecting our customer’s privacy and personal information. Personal information or personal data means any information that identifies, relates to, describes, is capable of being associated with, or could be reasonably linked, directly or indirectly, with a particular individual, such as name, identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that individual.
NIPD Genetics collects and processes your personal information according to the General Data Protection Regulation (EU) 2016/679 and the Cypriot law providing for the protection of natural persons with regards to the processing of personal data and for the free movement of such data (L. 125(I)/2018). The following principles lie at the heart of our approach to handling personal data:
- Lawfulness, fairness and transparency – We collect and process personal data in a lawful and transparent manner and clearly communicate to our customers how their personal data will be used.
- Purpose limitation – We only use personal data for the purpose for which they have been collected.
- Data minimization – We only collect the data that is absolutely necessary in relation to the purposes for which they are processed.
- Accuracy – We take every reasonable step to ensure that personal data collected are accurate and up to date.
- Storage limitation – We do not keep personal data for longer than it is needed. Personal data are periodically reviewed and erased if they are not needed or anonymized and stored for scientific research purposes.
- Integrity and confidentiality (security) – Appropriate technical and organizational measures are in place to ensure that personal data are adequately protected from any unauthorised or illegal processing and accidental loss, destruction or damage.
- Accountability – We, at NIPD Genetics, are committed to compliance with all legal requirements and promote internal practices to achieve the highest standards for personal data privacy.
NIPD Genetics has appointed a Data Protection Officer (DPO) who is responsible for overseeing and ensuring that personal information is collected and processed in line with these principles. The contact details of the Data Protection Officer (DPO) can be found below:
Email address: dpo@nipd.com
Postal address: 31 Neas Engomis street, 2409 Engomi, Nicosia, Cyprus
Telephone number: + 357 22266888
By accessing or using our products or services, or by transmitting information to us by email or other electronic means, you accept our policies, procedures and practices described in this Privacy Policy. If you do not agree with our policies, procedures and practices as described, you can choose not to access or use our products or services or not to transmit personal information to us.
This Privacy Policy applies to NIPD Genetics facilities, its websites www.nipd.com, www.nipdlabs.com, www.nipdlabs.com.cy and their subdomains, that link to this privacy pol icy.
PERSONAL INFORMATION COLLECTION AND PROCESSING
We collect and process several types of personal information from and about users of our websites and of our products and services, including:
- Personal and sensitive information: some of our products and services may involve testing of biological samples that we or our customers use to create test reports, genotyping or sequencing services for research or clinical purposes and the receipt, creation, or analysis of genomic or other data derived from samples, including through our customer’s use of our software as a service product. In receiving samples and providing our products and services, we may obtain your name and surname, date of birth, email address, home address, telephone number, gender, ethnicity and other health related information.
- Computer, device and browsing information: as you interact with our products and services online, including this website, we may use automatic data collection technologies to collect certain information about your computer or device, as well as browsing actions and usage patterns. This data may include your IP address, browser type or version. The technologies we use for this automatic data collection may include cookies. You can control cookies by adjusting your cookies settings.
Information about children
If you are under 18 years of age, do not register on our website or provide any information about yourself to us. We do not provide our products or services directly to children or proactively collect their personal information. Despite this prohibition, it is possible that we may sometimes be given information about children while handling samples from our customers in our clinical labs, or through use of our products and services by our customers and partners. If we become aware that we have inadvertently collected personal information from children under the age of 18, without parental consent, we will take the necessary steps to delete it as soon as possible in compliance with applicable laws.
LEGAL BASIS FOR PROCESSING OF YOUR PERSONAL INFORMATION
Your personal information is collected by NIPD Genetics for the following purposes:
- To provide you with our products and services, respond to your inquiries or fulfill your requests and otherwise manage your relationship with us. The legal basis for processing is to meet the requirements of a contract, to comply with our legal obligations and/or because we have a legitimate interest in responding to requests for information about our products and services.
- To communicate with you about content and product offerings, newsletters and event invitations which are relevant to your interests and in line with your preferences. The legal basis for processing is the individual’s explicit consent prior to sending the information and managing individuals preferences.
- To process and respond to complaints. The legal basis for processing is to meet a legal obligation.
- To monitor and record information relating to the use of our products and services, including our website. The legal basis for processing is our legitimate interest in order to improve our products and services and our website for individuals.
To provide our products and services, NIPD Genetics may collect, receive and process biological samples to isolate and sequence DNA. NIPD Genetics may then store resulting genetic information and use genetic information to provide our products and services. In some cases, NIPD Genetics may provide interpretations of genetic information on behalf of its customers, including healthcare providers. This is only done pursuant to a written contract or a Sample Information Form with a patient’s informed consent and is subject to applicable legal and ethical safeguards.
This sensitive information described above is collected by NIPD Genetics for the following purposes:
- To provide support and maintenance services to customers who use our products and services – The legal basis for processing is to meet the requirements of a contract.
- To provide genotyping and sequencing services and analysis for our customers, including healthcare providers. The legal basis of this processing is to meet the requirements of a contract or as allowed in the Sample Information Form with a patient’s informed consent.
- To conduct genotyping and sequencing services and analysis for quality control, process and product development and improvements, and optimization in our labs to reflect quality improvements and advances in our technology. The legal basis for processing is the patient’s informed consent given through the Sample Information Form.
Transfer of Data
Your information, including personal data, may be transferred to - and maintained on - computers located outside your province, country or other governmental jurisdiction where the data protection laws may differ than those from your jurisdiction.
If you are located outside Cyprus and choose to provide information to us, please note that we transfer the data, including personal data, to Cyprus and process it there.
Your consent to this Privacy Policy followed by your submission of such information represents your agreement to that transfer.
NIPD Genetics will take all reasonable steps necessary to ensure that your data is treated securely and in accordance with this Privacy Policy and no transfer of your personal information will take place to an organization or a country unless there are adequate controls in place including the security of your data and other personal information.
Disclosure of Data
NIPD Genetics complies with the General Data Protection Regulation and will not sell or trade your personal information.
NIPD Genetics may disclose your personal information in the good faith that such action is necessary:
- To comply with a legal obligation
- To protect and defend the rights or property of NIPD Genetics
- To prevent or investigate possible wrongdoing in connection with our products and services
- To protect against legal liability
COOKIES AND OTHER TRACKING TECHNOLOGIES
Cookies are files with small amount of data which may include an anonymous unique identifiers. Cookies are sent to your browser when you visit a website and stored on your device. Tracking technologies used on the website are beacons, tags and scripts, to collect and track information and to improve and analyze our websites.
We use cookies and similar tracking technologies to track the activity on our websites and collect certain information. This includes information about the computer or device you are using, such as Internet protocol (IP) address, information about the browser type or version, the pages of our website that you visit, the time and date of your visit, the time spent on those pages, unique device identifiers and other diagnostic data.
You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our websites.
Examples of Cookies we may use:
Session Cookies. We use Session Cookies to operate our websites.
Preference Cookies. We use Preference Cookies to remember your preferences and various settings.
Security Cookies. We use Security Cookies for security purposes.
Visitor behavior cookies. To understand how visitors use and navigate the websites
Keyword cookies. To understand how visitors discover the websites.
ANALYTICS
We may use third-party Service Providers to monitor and analyze the use of our websites.
Google Analytics
Google Analytics is a web analytics service offered by Google that tracks and reports website traffic. Google uses the data collected to track and monitor the use of our service. This data is shared with other Google services. Google may use the collected data to contextualize and personalize the ads of its own advertising network.
You can opt-out of having made your activity on the Service available to Google Analytics by installing the Google Analytics opt-out browser add-on. The add-on prevents the Google Analytics JavaScript (ga.js, analytics.js, and dc.js) from sharing information with Google Analytics about visits activity.
For more information on the privacy practices of Google, please visit the Google Privacy & Terms web page
SECURITY OF DATA
We are committed to protecting the security of the information we collect, and we take reasonable physical, technical, and administrative safeguards such as data anonymization and encryption to help protect personal information from unauthorized or inappropriate access or use. It is your responsibility to protect the confidentiality of your passwords, and any other access features associated with your access or use of the website or our products and services, as well as to adhere to any applicable Terms of Use or other contract between us and you or your organization.
PERSONAL DATA RETENTION
We may retain collected information even after you remove it from the website, our Services, or our Products, to comply with applicable law, to resolve disputes, to enforce any rights in connection with the website, our Services, or our Products, and to use as provided in this Privacy Policy, the Terms of Use, or an applicable contract between us and you or your organization. How long we retain specific personal information varies depending on the purpose for its use and we may delete or retain your personal information in accordance with applicable law.
SERVICE PROVIDERS
We may employ third party companies and individuals to facilitate, maintain or operate our websites (“Service Providers”), to provide the websites on our behalf, to perform service-related services or to assist us in analyzing how our websites are used.
These third parties have access to your Personal Data only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.
LINKS TO OTHER SITES
Our websites may contain links to other sites that are not operated by us. If you click on a third-party link, you will be directed to that third party's site. We strongly advise you to review the Privacy Policy of every site you visit.
We have no control over and assume no responsibility for the content, privacy policies or practices of any third-party sites or services.
CHANGES TO THIS PRIVACY POLICY
This Privacy Policy may be updated from time to time. We will notify you of any changes by posting the new Privacy Policy on this page.
We will let you know via email and/or a prominent notice on our website, prior to the change becoming effective and update the “effective date” at the bottom of this Privacy Policy.
You are advised to review this Privacy Policy periodically for any changes. Changes to this Privacy Policy are effective when they are posted on this page.
YOUR LEGAL RIGHTS
NIPD Genetics ensures that it can respond immediately to requests that you make for the exercise of your legal rights in accordance with data protection laws. These rights are as follows:
- The right to withdraw consent at any time – in cases where processing is based on your consent
- The right of access – at any given time you have the right to know what information about you we hold and receive information about the processing activities we perform
- The right to rectify – you have the right to correct, amend and complete personal data that is incomplete
- The right to erasure (“right to be forgotten”) – you can request that your personal information is deleted
- The right to object – you can object at any time to our processing of your personal information
- The right to restriction of processing – this applies in the event:
- You dispute the accuracy of your personal information and until it is verified
- You oppose to the deletion of personal data and ask instead to delete the use of it
- The personal information is no longer necessary for us
- You object to the processing and we are considering whether our legitimate grounds for processing prevail over the reasons you oppose to the processing
- The right to data portability – at any given time you have the right to receive the personal information we hold about you in a structured, commonly used and machine-readable format (pdf, word etc.). You also have the right to request that these data are transferred to another service in a safe and secure way
You also have the right to lodge a complaint at any time to the Office of the Commissioner for Personal Data Protection.
We encourage you to contact us, should you wish to practice any of your legal rights or you have any questions about this Privacy Policy, by sending an email to NIPD Genetics’ Data Protection Officer at dpo@nipd.com.
Effective date: 18/06/2021
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