News

New Institute Aims to Leave No Rare Disease Patient Behind

A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…

Post-surgery Use of Enoxaparin Lowered Blood Clot Risk

Treatment with the blood thinner enoxaparin within a few hours after curative pituitary surgery may help reduce the risk of blood clots forming in people with Cushing’s disease, a new study suggests. The study “Venous thromboembolic (VTE) prophylaxis in Cushing disease patients undergoing transsphenoidal surgery” was published in…

Group Focuses on Rare Disease Clinical Trial Participation

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

2-surgeon Bilateral Adrenalectomy May Be Better for Ectopic Cushing’s

A two-surgeon approach to bilateral adrenalectomy — the surgical removal of both adrenal glands — may lead to fewer complications and shorter operating time in patients with ectopic Cushing’s syndrome, compared with other surgical approaches. That finding from a small study, “Adrenalectomy in ectopic Cushing’s syndrome: a retrospective cohort study…

MRI May Not Detect Pituitary Tumors in Young Patients

MRI scans may fail to detect a disease-causing pituitary tumor in up to one third of children and adolescents with Cushing’s disease, a study found. In the study, patients with a negative MRI scan result were less likely to enter in remission after having surgery to remove the pituitary…