Huntington’s disease

PACE-HD – A Tale of Site Training: 5 Days, 4 Sites and 3,280 Miles

The team at GHI
The team at GHI

The Stats

Number of flight hours logged = 8.5 hours over 4 flights

Number of hours spent on trains = 14.5

Number of train connections = 4 (of which 2 were uncomfortably close)

Number of taxi journeys = 6

Number of hotel stays = 4

Number of hours sleep = not enough

Number of notifications of successful tenure applications = 1

Number of tenure celebrations = at least 3

Number of geocaches logged = 1

Background

PACE-HD is a longitudinal study of exercise in Huntington’s Disease (HD) with a nested RCT focussing on the feasibility of a 12-month exercise intervention. We have six sites in Europe and the US; 3 running just the observational study and 3 delivering the nested RCT. In January the PACE-HD team (Monica Busse, Rhys Williams-Thomas, Cheney Drew and our US collaborator, Lori Quinn) travelled to Europe to perform site initiation visits with our four European sites for PACE-HD:

  • GHI and Ulm (Germany)
  • Madrid and Barcelona (Spain).

Monday

After a frantic preceding week where all the documentation for sites for finalised, Monica, Rhys and Cheney enjoyed a leisurely, if a little stomach churningly bumpy flight from Bristol to Schipol Airport. It wasn’t until the last ten minutes of the flight (whilst some were desperately concentrating on not re-visiting their lunch in a wholly inadequately sized paper bag) we realised that we had approximately 55 minutes to taxi to the terminal, disembark, collect our luggage (containing all the sites files and equipment) and travel the 17 mins into Amsterdam Central to catch our first train.

Dashing through Schipol

Luck was most definitely on our side and as we ran off the airport train with 2 minutes to go, the train on the opposite side of the platform was the train we needed to board. We located up Lori, freshly arrived from New York by shouting loudly down the platform and we were then safely on way to Münster for stop number one. It was laptops out (*spoiler alert* this is going to be a theme of the trip) to finish off our presentation and rehearse our running order for the week.

Hotel located, a quick dinner in the local Greek restaurant, with complimentary shot of the local (!) ouzo was had, and we were ready to get going.

Tuesday – George Huntington Institute, Münster

We headed off to our first (observational) site at the George Huntington Institute, where we were warmly welcomed by local PI and PACE-HD co-app Dr Ralf Reilmann. GHI is an office and clinical suite developed specifically for the assessment of people with HD. Our time at GHI included some training for us on some novel automated assessments known as Q-Motor and Q-Cognitive with the team responsible for their design and development.

A re-scheduled and lengthened lunch break afforded us an opportunity to see some of the sites of the city and meet Ralf’s group of transgenic mini-pigs. Some of our party were much happier than others about this.

With equipment delivered and forms signed it was time to make our way back to the train station for leg number 2 of the tour from rainy Münster to snowy Ulm via Mannheim. For anyone who may want to travel by train in Germany in the future, we found that Deutch-Bahn is not a great deal better than GWR in terms of selection when it comes to on-board catering. The day’s training had raised a number of questions that required some clarification so again it was laptops out to work on training slides and metadata before we arrived at our next destination.

A late arrival at our next hotel was interesting to say the least. Reception was closed, and our keys left outside. We just about managed to work out how to open the front door which was quickly followed by the realisation that there was one room too few…..the less said about that the better.

Wednesday – University Hospital Ulm

Up early to the site of freshly fallen snow and we headed out to training our first intervention site at University Hospital Ulm.

Monica’s very best German got us some usable directions to navigate the sprawling hospital site to find what looked remarkably like a portacabin in the corner of the campus. Initial reservations quickly dissipated and we were very impressed by the excellent facilities at the neuro-rehabilitation centre where many of the PACE-HD assessments will be carried out.

The team at Ulm were all incredibly keen and includes specialist rehabilitation physiotherapists, giving us high hopes for successful delivery of the intervention at this site. Having been warmly received and handsomely fed we managed to squeeze all the intervention training into our allotted time and get all the paperwork signed before we needed to head to the station to catch our next train.

We were soon at Munich airport ready for our flight to Madrid. This felt like our first opportunity to sit down and enjoy a proper, non-train-based meal, which was particularly welcome given the ongoing delays to our flight on account of the snow. Not only did we board late, but we were kept on stand for about 2 hours whilst planes queued for de-icing.

During our on board wait Lori received an e-mail from mentor in Teacher’s College, Columbia University to tell her that she had been successful in securing tenure. For those not ‘au fait’ with the course of academic progression in the US, this is a very big deal!!!! Suffice to say- this had to be celebrated, but alas, Monarch airlines did not stretch to Prosecco.

We later found out that airports across Europe were closed to blizzard conditions and hurricane windows, and so our 2am arrival in Madrid suddenly didn’t seem so bad.

Thursday – Fundacion Jimenez Diaz, Madrid

We were up early after our late night and picked up from our hotel by the site coordinator from our Madrid site who has worked with Monica and Lori in the European Huntington’s Disease Association for a number of years. By now we were in full ‘training’ swing and we got through our schedule with great efficiency, helped along by regular caffeination from our generous hosts.

We noted that there is quite a contrast in healthcare provision across the sites we visited. FJD was marked by a real hustle and bustle from health care professionals and patients alike. This was particularly true in the rehabilitation department where people were working hard to regain lost function.

Geocaching

Out next rail connection wasn’t for a few hours, so we found ourselves in the unusual situation of having time to spare. We decided that our time was best spent sampling the local cuisine, which involved the second of our tenure celebrations with a cheeky Sangria and a walk around the local park in the afternoon sun.  It was during this walk that Cheney decided to reveal her inner geek and a love of geocaching- thus insisted on dragging the group to the nearest cache. A quick search resulted in success, but retrieval was hampered by the height of the hiding spot and a narrow opening. Everyone (except Cheney) went to locate some ‘facilities’ and were highly amused to return 15 minutes later to find her stuck up a tree still at it. Tenacity (and the use of a knitting needle) won through, but the end game left most confused and underwhelmed.

Onwards to the next train connection, stopping to admire the indoor jungle, replete with resident terrapins in Madrid’s main terminal. If you can have a favourite journey, then this has to be ours from the week- fast, clean and efficient- we even managed to locate a bottle opener (why, oh why sell bottles of wine in a train station with corks in and not screw tops?!).

Arriving at a reasonable hour for once afforded us the opportunity to properly celebrate (for the third time) Lori’s success at gaining tenure. Cocktail o’clock. Congratulations Lori!!!

Friday – Merce de Deu de la Mare, Barcelona

So the last day of the week and another early start for our last training session. Directorial PA Charlie and PACE-HD admin Hasnae, had put together some detailed and exceptionally helpful itineraries for out trip. Today’s showed us that we were in walking distance (~3 km) of our destination and so off we trotted. Once there it became apparent that the hospital we wanted is split over two sites and typically we were at the wrong one- so we got a taxi to the right place which dropped us over the road from our hotel……..

The rehabilitation hospital in Barcelona is a dedicated rehab centre with excellent facilities and expertise to cater for people with HD. The combination of dedicated HD clinicians and physical therapists make this an excellent site for delivering the physical activity intervention.

Training completed and technical network issues identified and solutions initiated our very kind host treated us to lunch before we made our way to the airport in Barcelona. Here we had a quick wrap up of the weeks activities and formed an action plan completing the works needed prior to site opening, swiftly followed by a little retail therapy, primarily to assuage the families we had left behind for the week.

Five hours, two flights and a time zone later we were back in Cardiff and in a taxi back to our respective homes.

The end of a very busy, but highly efficient and rewarding week.

Thanks to the whole team for all the hard work and enormous efforts put in to get us to this point. Onward with trial opening and upwards with recruitment!

Lessons From Our Grand European Tour

  • Our research sites are all really keen to start recruiting and we have high hopes for the success of the trial
  • The healthcare and healthcare facility options for people with HD vary wildly across countries and the regions with in them
  • Would quite happily live in Germany and bask in their constant efficiency
  • Pigs are an acquired taste
  • Geocaching is an acquired taste
  • Monica can spot a single letter of Calibri within a sea of Arial with alarming accuracy
  • Cheney likes to leave ample time to get from A to B, often resulting in being where you need to with substantial time to spare.
  • Monica never stops and we’re not quite sure how she does it (!)
  • We can spend an intense week together and still be on good terms at the end of it
  • The PACE-HD team both from the Centre for Trials Research and at all our sites rock!