The International Consortium for Vertebral Anomalies and Scoliosis (ICVAS) was established in 2006 by scientists and clinicians interested in understanding the causes of vertebral anomalies and scoliosis.
The primary objective of ICVAS is to provide members
with the tools (DNA and clinical data) necessary to facilitate research into the causes of scoliosis.
In order to achieve this objective, ICVAS has developed a cell repository containing samples from patients with scoliosis. The samples are obtained from patients by ICVAS members who are clinicians, who see such patients in their individual institutions. Prior to collecting samples, the clinician must obtain IRB approval and the patient must be appropriately consented. Once collected, the samples are sent to a cell repository, where cell lines are created. The purpose of creating cell lines is to allow for a continual source of DNA for an indefinite period of time. Members of ICVAS can then order DNA from the cell lines, to be used in their individual research. In addition, ICVAS has also created a database which will contain anonymous clinical data from the patients who agreed to participate in the study. This database allows members to determine which patient samples they would like to order. It can also be used to study trends in the clinical features and outcomes of patients with scoliosis. Access to the cell lines and database is strictly limited to ICVAS members.
The consortium’s members include scientists and clinicians from around the world. Prior to becoming a member of ICVAS, an individual must agree to specific medical and ethical requirements. These requirements protect the patient and the consortium, ensuring both parties understand their roles in meeting the objectives of ICVAS. Individuals interested in becoming a member must also agree to contribute samples or novel research ideas in order to be granted membership. To learn more about membership in ICVAS please see the “Join ICVAS” link on our website.
When an individual with scoliosis or vertebral anomalies agrees to take part in an ICVAS study a consent form must be signed. Once the consent is signed, blood may be drawn. All blood samples are de-identified and assigned a random ICVAS identification number. This means that the patient’s name, date of birth and medical record number are removed. When a patient agrees to take part in an ICVAS study, they may also be asked a series of questions about their medical history. This information is then submitted, without the patient’s name (or any personal identifiers), to the ICVAS database.
The results of this research will not be reported to the patients who submit samples, nor will the participants be compensated for their involvement. ICVAS is a non-profit organization, therefore the ICVAS does not benefit financially from member involvement or discoveries. The information gained from research using the ICVAS resources may help scientists better understand the causes of scoliosis, ultimately leading to possible treatment and prevention.