The 4th Pan-European Conference on Haemoglobinopathies and Rare Anaemias is organiased by the Thalassaemia International Federation (TIF) in Athens, Greece, between 7th and 9th of November 2014. The deadline for Early Bird Registration is on 10 September 2014.

TIF, starting with this Regional Educational Event, is taking a step ahead towards realising its commitment in creating and strengthening core groups of expert patients and medical specialists/ health professionals. In this context, Regional Conferences including the Pan-European, the Pan-Asian, and the Pan Middle-East Conferences, have now been turned into educational events, tailored to the needs of patients and health professionals within and between countries geographically.

For more information, please visit the conference website and the TIF webpage. For more similar upcoming events, visit the ITHANET events page.

Multi-phase, patient navigator-based program in the Richmond and Tidewater regions of Virginia to demonstrate:

1. the feasibility of using patient navigators to improve the percentage of adult (age 15 and older) patients with sickle cell disease (SCD) in SCD specialty care
2. the efficacy of using patient navigators to improve hydroxyurea (HU) (re-)initiation and adherence among adult patients with SCD eligible for HU

(Patient navigators may also be known as public health workers.)

More information: clinicaltrials.gov, ITHANET Clinical Trials

The goal of this pilot study is to improve emergency department (ED) pain management for adults with sickle cell disease (SCD). Management of painful episodes associated with SCD, referred to as vaso-occlusive crises (VOC), is the most common reason for SCD patients to visit the ED. Currently, there is no standard approach to managing VOC pain in the ED that is widely accepted and used, and pain management for VOC in persons with SCD is very different between providers and not based on research. Many times, patients who come to the ED with sickle cell pain feel that they do not receive adequate pain control. If EDs could provide efficient, effective, safe, patient-centered analgesic management, it may be possible to improve pain management for adults with SCD experiencing a VOC. Guidelines for treating VOC caused by SCD will soon be published by the National Heart, Lung and Blood Institute of the National Institutes of Health. These guidelines recommend patient-specific pain treatment protocols or a standardized pain management protocol for SCD when a patient does not already have a pain treatment protocol designed for them. The purpose of this pilot study is to compare these two ways to treat vaso-occlusive pain in the ED for adults with SCD, and to determine if a large randomized controlled trial is feasible and required.

More information: clinicaltrials.gov, ITHANET Clinical Trials

The purpose of the study is to develop patient-provider clinical support tools to improve clinical practice, patient self-management, and disease outcomes in sickle cell disease during transition to adult care. The investigators hypothesize that these clinical support tools (patient tool, provider tool, and patient/parent web-based portal) will be feasible, user friendly, and beneficial. The investigators hypothesize that participants will demonstrate better disease self-efficacy at the end of the 6 week intervention and maintain these gains during the follow-up period (up to 1 year post-intervention).

More information: clinicaltrials.gov, ITHANET Clinical Trials