Center for the Study of Genetic Skeletal Disorders
Patients and Families
We appreciate your interest. It is important to understand that participating in our research and submitting a sample is a voluntary donation to medical research.
We cannot guarantee that our research will benefit you or your family personally. To ensure that your rights are fully respected, we ask that you only participate in research and submit samples after you:
- speak with your own physician or healthcare provider
- review our informed consent form
- speak with us personally by telephone
Before participating in our research, we must speak with you by telephone or in person in order to obtain your informed consent. We also ask that any samples be submitted in conjunction with your local healthcare professional.
We thank you for your understanding and cooperation.
Health care professionals:
Thank you for your interest in helping patients and families under your care to participate in our research. We look forward to working with you and your patients.
Steps for participating in research and for submitting a sample:
- Health care professionals and potential study participants need to contact us first. Important: In order to enroll in a research study a participant must give his/her informed consent. We will email or mail our consent form and then review the form with each participant by telephone or in person. You may participate in our study after returning to us a signed copy of our consent form.
- Consent forms can be requested by emailing Dr. Matthew L. Warman, or by calling 617-919-2371. View an example consent form.
- After you consent to participate in our research study, you will be asked to complete the appropriate participant data collection form.
- The research samples we request from a study participant will depend upon that participant's diagnosis, age, and medical status. We will discuss with each research participant and their local health care provider the type of research samples we would like to receive. Examples of how specific types of samples can be collected, processed, and sent to us is described here.