Clinical, diagnostic, and genetic research in lymphedema and related disorders is growing in hospitals and Academic Institutions in the United States. With this growth comes the need for clinical trials and active patient participation. Please check the location and if you fit the study.
These trials can be forerunners to medical breakthroughs. The more patients who participate in these studies, the stronger the outcomes.
Please spread the word in your support groups and share with your medical team.
-NLN Research Committee
David Finegold, MD and Robert Ferrell, PhD. at the University of Pittsburgh, Department of Human Genetics have established a study to identify genes that contribute to inherited lymphedema. In order for this study to be successful, we are seeking the cooperation of families in which two or more members suffer from inherited (primary) lymphedema such as Milroy's or Meige's Disease with swelling in one or both legs. Participation does not require travel to Pittsburgh, and although there is no payment made to subjects for participation, expenses such as blood drawing fees and mailing costs are covered by the study
Participation in the Lymphedema Family Study initially involves telephone interviews with one or more family members to obtain family and medical history information. Family members both with and without lymphedema who are willing to participate and then asked to provide blood samples, sign a consent form, and fill out a short questionnaire. Medical records are also requested from family members with medically diagnosed lymphedema for confirmation. These materials are all included in a blood kit which we can mail anywhere in the country. The blood sample, signed consent form, and completed questionnaire are then overnighted back to us in a pre-addressed postage-paid UPS envelope which is included with the blood kit. Also included with the blood sample (or can be sent to us later) should be any bill for having the blood drawn, which we will either pay directly to the institution or provide reimbursement to the patient.
The success of this research study critically depends on obtaining blood samples from as many members of each family as possible. However, participation is entirely voluntary, and even if a family elects to participate, individual family members may refuse participation or withdraw from the study at any time. Any information obtained by the interview or by testing of blood samples will be strictly confidential. Information about the participants will only be released to someone else upon written request by the individual or his or her legal guardian.
This is a research study, and therefore, we cannot guarantee that any information will be available for the participant. General results will be reported to families in the event that additional lymphedema genes are discovered. This study does not involve diagnosis or treatment of lymphedema, and it was not designed to provide any direct benefit to the participant. However, if the specific genetic change (mutation) causing the lymphedema is identified in a particular family, members will be offered the opportunity to learn their research results. Our hope is the identification of the gene(s) responsible for primary lymphedema will provide a better understanding of its cause and aid in the development of new and better treatments.
Anyone interested in learning more about the Lymphedema Family Study can look up our web page at www.hgen.pitt.edu/projects/lymph or call the study coordinator toll-free at (800) 263-2152.
Kara Levine, MS, Coordinator
Lymphedema Family Study
University of Pittsburgh
Department of Human Genetics
A300 Crabtree Hall, GSPH
Pittsburgh, PA 15261
Phone (412) 624-4659 or (800) 624-3020
Email: genetics [at] pitt.edu