Question collection thread for S4ME Q&A with Dr Heidi Nicholl of Emerge Australia, Sept 2019

Following the news that the Australian patient charity Emerge are partners in the group that has won funding to establish the first Australian ME/CFS biobank and registry, I'll be having a video Q&A with Dr Heidi Nicholl, CEO of Emerge, on Tuesday 3rd Sept.

From the Emerge website, Dr Nicholl's bio

CEO: Dr Heidi Nicholl

Heidi has been CEO of Emerge Australia since February 2018.

With a PhD in medical ethics and a background working with patients and medical professionals Heidi is well aware of the many issues affecting patients with ME/CFS and their carers.

Having started her career as a laboratory scientist specialising in Developmental Biology Heidi followed her PhD with a long stint working in medical education. Prior to starting as CEO at Emerge Australia Heidi specialised in teaching ethics and law concerning women’s health and child health. She held a full lectureship in Healthcare Ethics at City University London and was Lead for Ethics and Law Teaching in clinical year two at University College London Medical School. Her most recent teaching position was as part of the Yale Interdisciplinary Center for Bioethics Summer Program in 2016.

A British native Heidi has lived and worked in the UK, Germany, USA and is now based in the Bayside area of Melbourne.​

So post your questions below and I'll do my best to include them all.

ETA: To see the format that this Q&A will be in, the YouTube playlist of all our Q&As so far is here, https://www.youtube.com/playlist?list=PLueHKJtiq09dtfqte4pcFkEbFaeWSQqRD

ETA2: Added date of Q&A in text above.

 

Questions from Mali (in the MEANA group):

How do we participate in the blood bank?
Do they want ME/CFS patients to donate blood specifically for the biobank or will the samples just be collected from people who are already enrolled in studies?

 

Questions from Sam (MEANA group):

Who will have access the to patient registry list? What level of anonymity can we expect?
If my samples are added to the biobank and analysed, will I be able to access my personal results?

 

Question from Jac (MEANA group):

Do we need to provide our diagnostic details ie the doctor, and/or hospital, and a date or rough date of diagnosis to be on the patient registry?

 

To explain: I posted this thread in the ME Advocacy Network Australia FB group, and several members had questions but aren’t members of S4ME (and no spoons for signing up to something new), so I’m posting on their behalf.

 

I have some questions: I’m especially excited that this project brings together the UK ME/CFS Biobank and Solve’s patient registry and symptom-tracker app.

How will the three organisations work together? What resources will the UK biobank and SMCI share with the Australian biobank? Will international researchers have access to the Australian biobank and registry data?

It strikes me that this model of transnational collaboration is what we need more of. Obviously, this project is funded by the Mason Foundation for Australian research, but would there be scope for this model to be expanded to include other countries in the future?

 

Question from Shelley-Lee (MEANA group):

Will young people or adolescents be included in the sampling, or just adults?

 

Another question from me:

Does the funding include provisions for going to the homes of housebound or bedbound people to collect samples?

(PS Sorry to hog the thread, @Andy!)

 

How would the actual collection process after patients are selected work, given the limitations PwME tend to have with transport etc.

The Red Cross involvement makes me thing they do the actual blood draws at any(?) of their locations by appointment - is that how it will work? What about their mobile locations? The buses/vans may be more accessible for some people than getting to a further away bricks and mortar collection location, but then AFAIK they are very wheelchair unfriendly so it'd depend on the patient.

So past that, what about housebound and bedbound patients? Cause they are probably the most vital to include in a biobank so pleeeeeeeease tell me they'll be catered for!

 

Questions from Susan (MEANA group):

Will patients who have comorbid conditions be allowed to still give blood and be part of the research pool?

Also will those taking medication be allowed to be included.

 

Question from Susanna (MEANA group):

Do they have access to a doctor who will correctly diagnose patients for acceptance to the biobank as per CCC or ICC? How will you ensure that the biobank samples come from patients with ME/CFS?

 

Question from Susan (MEANA group):

Will patients be asked about their onset type, and will the databank allow for extensive descriptions in answering that question?

A tick box for sudden/gradual/relapse & remission/viral/trauma doesn't capture enough valuable information which may be crucial down the line in determining sub groups. This is especially so for patients who are not clear cut. Also, the order of symptoms appearing might be valuable; again where narrative can be captured.

 

Yes, my plan at the moment is to have two main topics, the news about the Biobank and Emerge and the work it does.

 

Presumably the new Australian MEBiobank will be based on the UK one.

@Simone it might be useful for you and others in Australia to watch the two Q&A sessions with members of the Cure ME / UK MEBiobank see thread here
https://www.s4me.info/threads/video...k-me-cfs-biobank-team-june-2019-pts-1-2.9973/

 

Question from Fiona (MEANA group):

Will samples from patients who've already participated in research done by Paul Fisher and/or colleagues such as Brett Lidbury automatically be included in the biobank, or would those patients have to donate again?

 

I watched the Q&As, they were terrific. Heidi has had several discussions with the UKMEB team during the development of the application, and no doubt these will continue as the biobank is set up.

 

Question from Julia (MEANA group):

Will the biobank only store blood, or will it store other types of samples too?

 

Will older people (65+), who are so often left out of research, be included?
We tend to have long and complicated histories (eg 50 years+) which surely could be of some value to researchers to analyse, as well as insights gained from our longer term perspectives on the illness.