Welcome to the May Edition of the MRDR Newsletter!

We start this newsletter with the exciting news that our 380th patient has been registered. The research team thanks the clinicians and data managers for their support of the MRDR. This newsletter recaps news from the first quarter of 2014 and looks ahead to developments later in the year.

A word of thanks to our supporters, Novartis and Celgene. Both Novartis and Celgene have provided grants for the MRDR. Without their continued support, this important research could not take place. Thank you!

Medicine, Nursing and Health Sciences

The Myeloma and Related Diseases Registry

May 2014 Newsletter

Image: Dr Pasquale Fedele, Monash Health

QLD:Princess

AlexandraHospital

NZ:Middlemore

HospitalNSW:Royal Prince Alfred

HospitalSt. George Hospital

WA:Sir Charles GairdnerHospital

VIC:The AlfredThe Austin

The NorthernPeninsula Health

St Vincent’s Hospital Melbourne The Royal Melbourne Hospital

Box Hill Private Practice

SA:Royal Adelaide

Hospital

MRDR Sites in Australia and

New Zealand

Welcome Aboard!

We are delighted to welcome aboard three new sites, Box Hill Private Practice, The Royal Melbourne Hospital (RMH) and St George Hospital, Sydney. Box Hill Private Practice is our first private practice. The Northern Hospital in Melbourne has also recently begun entering cases. We’re looking forward to working with all of you!

Upcoming Sites

Ethics or governance applications are in progress at Peter Mac, Cabrini and Monash Health in Melbourne. The team at Royal Adelaide Hospital have continued to remain supportive of the MRDR despite a number of technical and logistical hurdles to overcome. Together with the technical and clinical teams at both the MRDR and at Royal Adelaide, we look forward to Royal Adelaide entering data later in the year.

Meetings Recap

Data Managers’ Meeting – Tuesday 4 February

This meeting focused on identifying data entry issues and barriers. The majority of sites (and some upcoming sites) participated in this teleconference, providing fantastic feedback to the team. This feedback has been used to form the basis of the MRDR upgrade proposal which aims to iron-out data entry issues and provide increased functionality. Importantly, the teleconference was a useful forum for sites to talk together and to learn from their experiences.

Monash University reserves the right to alter information, procedures, fees and regulations contained in this document. Please check the Monash University website for updates (www.monash.edu.au). All information reflects prescriptions, policy and practice in force at time of publication. Published April 2014. MMS370147

Getting to Know You…

Meet Tracy King, Myeloma Nurse, MRDR data collector and Research Fellow at Royal Prince Alfred Hospital, Sydney.

What does your day job involve?I have a few roles with an overarching myeloma theme!

Principally I’m the myeloma nurse consultant within the Institute of Haematology at RPA in Sydney. My role is based on that of a care coordinator in that I manage the wider information and supportive care needs of those affected by myeloma in our facility. I’m introduced at diagnosis as a point of contact within the haematology service. I’m also a clinical research fellow and clinical lecturer within Cancer Nursing Research Unit (CNRU), Sydney Nursing School. Here I manage a program of supportive care research in myeloma with specialist interest in patient reported outcome measures (PROMs), information needs and the experience of high dose steroids in myeloma. More recently I’ve been coordinating and managing the data entry the data entry for the MRDR in our facility. On a day to day basis – I talk about myeloma all day, to everyone! I’m a kind of myeloma mentor to our patients.

What is the most satisfying element of your role?That’s easy: through targeted information and education, to help people become active participants in their care and to learn how to live better with myeloma.

How do you see the MRDR benefitting patients and clinicians?

The MRDR is an essential tool to help clinicians better understand the characteristics of myeloma (incidence, aetiology, treatment outcome, broader clinical experience etc) in our region. By understanding myeloma in our region, we are able to provide more relevant objective information to those affected by myeloma. As a nurse, patients talk to me a lot! They perhaps ask me all the questions they shy away from asking their Haematologist. Who gets myeloma in Australia? What treatment is best for me? How will I respond to therapy? Will my quality of life change? These are just the questions MRDR is aiming to address. In my experience when I talk to people about participating in MRDR they assume we already have a registry and are more than happy to contribute to improving our understanding of this disease, now and into the future.

If you could tell new sites one thing that you wished you’d known prior to entering cases on the registry for the first time, what would it be?Ensure your team are good at documenting! When the information is where it should be – it’s a simple case of data entry. Also, if a patient is enrolled on a clinical trial – bingo, the data will be collected for you!

Publications and PresentationsMRDR featured in HSANZngThe MRDR was featured in the latest edition of the HSANZng, courtesy of its editor, Tracy King.

MRDR at the Myeloma Foundation AustraliaProfessor Andrew Spencer presented a brief summary and preliminary MRDR data to the MFA in February, continuing to ensure that research generated from the MRDR is presented in both clinical and patient forums.

The EQ5D and Patient Brochures

The EQ5D is a short survey that collects information on patient quality of life. This forms a key part of the MRDR research as it enables us to view quality of life changes over time, treatment and disease progression.

It is important that once these have been completed the information is entered into the MRDR and that the surveys are posted to DEPM, Monash University where they will be stored securely.

Patient brochures are another important component of the research. Not only do they inform patients about the research, they are required to be given to patients or their caregivers before patients can participate in the registry and data collected for the MRDR. Let us know if you need either of these documents and we’ll post them out. Our contact details are below.

Training and Support

Let us know if you would like a site visit or teleconference to assist you with any element of the MRDR. We’re always looking for ways to help support our clinicians and data managers. We can also speak with hospital teams and other clinicians as required or provide you with MRDR power point slides. Please don’t hesitate to ask.

Contact Us:Phone: 1800 811 326 email: torc.sphpm@monash.edu

Address Department of Epidemiology and Preventive Medicine School of Public Health and Preventive Medicine Monash University, Alfred Hospital, Commercial Rd, MELBOURNE Vic 3004

Steering Committee Meeting – Thursday 13 February

Steering Committee meetings allow the research team to present initial data (in this case accrual data were presented), discuss findings and to drive the direction of the research. One of the key outcomes of this meeting was a decision on a waiver of consent for deceased patients. Currently, only patients (or their caregivers) who have received the Patient and Family Information Brochure can be included on the registry.

Waiver of Consent for Deceased Patients – Information for All Sites

After receiving advice from registry expert and Steering Committee member, Professor John McNeil, the research team have decided to request an amendment from all HRECs for a waiver of consent for deceased patients. This means that data managers and clinicians will soon be able to register and collect data from patients with the cause of death listed as myeloma or a related disease within three months prior to HREC approval at the site. Including deceased patients on the MRDR is important because it ensures that the registry collects data on the most severe and unwell patients and avoids the issue of selection bias. NB: Until sites receive formal notification that this amendment has been approved, sites cannot enter data on deceased patients. Sites will receive formal notification once approvals from individual HRECs have been received.

Revised Project Outline

The Project Outline has been revised and additional detail has been added to most sections. This revised outline will be submitted to all HRECs for approval, along with the request for a waiver of consent for deceased patients. Sites will be formally notified when approvals for the new outline have been received.

Upgrades

The next few months will see the MRDR being upgraded to fix the data entry issues that have been identified by both data managers and the research team. The upgrade will focus on issues entering core data, such as additional decimal places and the most appropriate units of measurement. All sites will receive notification regarding the timing of the upgrades. Keep us posted if your site is experiencing any difficulties entering data. It all helps to make the MRDR a better registry.