Research Participation
The Hagermans welcome the participation of individuals and families with fragile X syndrome, FXTAS, or any other condition related to expansions of the fragile X gene. Such participation may involve the development of better clinical measures for these conditions, involvement in clinical trials, or contributions to more basic molecular research into the disease process. For the latter, participation may involve providing a blood sample or skin biopsy as part of thorough clinical evaluation. For more details regarding participation, please contact us.
A word on Research Testing versus Clinical Testing
Our lab is solely focused on research. We perform many types of gene testing of blood and tissue samples on a research basis and only following informed consent by the patient or family for such studies. By contrast, a commercial Clinical Laboratory performs only those tests that are necessary for clinical diagnosis or for monitoring clinical course. The purpose of a research lab and a clinical lab are fundamentally different, the goal of the research lab is the discovery of new treatments, whereas the goal of the clinical lab is to guide the physician in patient care.
If a doctor's office sends your blood sample for FMR1 testing, they are sending your blood to a clinical diagnostic laboratory, where your sample is tested along with hundreds of others they perform each day. When the results are ready, the clinical lab writes up an official summary of your results and what they mean. These results go back to your doctor and will be put in your medical records. Also, if you have medical insurance, that company is billed for the testing at a clinical lab.
In the Hagerman laboratory, we test all samples for research purposes only - and never at any cost to the participating individuals or families. Sometimes the sample is tested right away and sometimes it may be stored for future testing. Timing can depend on what we are studying at the time or our funding situation; both may push a lot of samples through or contribute to delays. Research takes time.
Although we do not offer diagnostic results as commercial laboratories might. If the family/participant desires more information, we are always willing share results on a research basis through our M.I.N.D. Institute research personnel (contact us).
