Monitoring acromegaly patients with ACRODAT

Learn about the acromegaly-specific Disease Activity Tool you can use to help monitor and optimise support for your acromegaly patients at every stage of their journey

ACRODAT® is a validated, web-based software medical device

  • Available as part of the commercial package offer for Somavert
  • Developed in collaboration with a panel of global acromegaly experts
  • No installation is required: ACRODAT is accessible on a majority of platforms including desktops, laptops and tablets

Discover more about ACRODAT from one of the world acromegaly experts who supported its development

Professor AJ van der Lely, Erasmus MC, Rotterdam, Netherlands, explains the theory behind the development of ACRODAT and its uses in a practical clinical setting, alongside information about the parameters it helps to track

 

ACRODAT can be used to track acromegaly disease activity status from one appointment to the next

  • Monitors and highlights changes in five disease-specific parameters:

ACRODAT monitors IGF-I, tumour status, symptoms, commorbidities and AcroQOL

 

ACRODAT enables an ongoing holistic overview of each patient’s acromegaly

  • Categorises patients based on stable, mild or significant levels of disease activity:
Example Patient Information Summary in ACRODAT*
*Each row represents a visit. Visit date in grey represents a visit with incomplete data entry. Patients can be given a unique code to access their own AcroQoL survery (for the QOL parameter) for each visit, the results of which will be sent to their full profile, viewable in the HCP site.

 

 

 

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A simple four-step process to help track your patients’ progress

Step 1: Adding patientsWhite icon for adding patients to the ACRODAT system

Following registration, each authorised user in your clinic can add a new patient or access existing patient data which is stored in encrypted form within the searchable ACRODAT database.

Step 2: Inviting patients to complete questionnaireACRODAT inviting patients to log data icon

Prior to each patient visit, you can generate a patient and visit-specific code. This enables the patient to log in to a patient-specific side of the site and complete a quality of life questionnaire for their upcoming visit. This can be done at home or in the waiting room beforehand. Alternatively, you can input QoL information in discussion with your patient during their consultation with you.

Step 3: Data inputWhite icon for inputting data into the ACRODAT system

At each patient visit, you will be asked to input brief information about clinical history and disease-specific parameters into the database.

Step 4: Assessing results and exporting dataWhite icon for assessing results in the ACRODAT system

Using a validated algorithm created in collaboration with acromegaly experts, ACRODAT calculates each patient’s current overall disease activity status. Patient data input over a period of time can be viewed graphically or exported as an Excel file.

 

Example Patient Status Overview Graphs in ACRODAT
How ACRODAT looks - patient data overview graphHow ACRODAT looks - patient data IGF-I graphHow ACRODAT looks - patient symptoms graphHow ACRODAT looks - patient data quality of life graph

 

 

 

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Quality of life is commonly impaired in people with acromegaly, even after successful treatment13

Some patients are never asked about the psychological impact of their condition4

Acromegaly has a huge variety of symptoms and comorbidities, and hence there are an equal number of key players involved in optimising care for patients with the condition.1,5 However the psychological aspect of dealing with acromegaly – together with the potential psychophysiological impact of pituitary hormone production imbalances caused by the condition itself – is something that can go overlooked.3,4,6

Hear from two professionals involved in optimising care for acromegaly patients about the importance of a holistic approach, and ways to achieve it

The importance of psychology

How the endocrine nurse can help

Dr Sue Jackson, Research Psychologist, Bristol, discusses the importance of holistic support that considers the psychological impacts of the condition for patients with acromegaly

Mr Sherwin Criseno, Advanced Endocrine Nurse Practitioner, University Hospital of Birmingham, discusses how nurses can support patients with acromegaly from diagnosis through ongoing management 

 

How ACRODAT facilitates a holistic approach to acromegaly care

ACRODAT incorporates the AcroQOL questionnaire, a validated acromegaly-specific quality of life questionnaire.7 By capturing acromegaly-specific patient data on both the psychological and physical impact on quality of life for people living with the condition, ACRODAT provides a straightforward and systematic way for you to identify patients who may require further psychological support.

 

 

 

References:
  1. Melmed S, et al. A Consensus Statement on acromegaly therapeutic outcomes. Nat Rev Endocrinol 2018;26:1.
  2. Geraedts VJ, et al. Predictors of Quality of Life in acromegaly: no consensus on biochemical parameters. Frontiers in Endocrinol 2017;8(40):1–14.
  3. Crespo I, et al. Update on quality of life in patients with acromegaly. Pituitary 2017;20(1):185–8.
  4. Wayne Brown. Alone in my universe: Struggling with an orphan disease in an unsympathetic world. Indiana, United States. iUniverse. May 2011: 268.
  5. Chanson P and Salenave S. Acromegaly. Orphanet J Rare Dis 2008;3:1–17.
  6. Gurel MH, et al. Patient perspectives on the impact of acromegaly: results from individual and group interviews. Patient Preference and Adherence 2014;8:53–62.
  7. Webb SM, Prieto L, BadiaX, et al. Acromegaly Quality of Life Questionnaire (ACROQOL) a new health related quality of life questionnaire for patients with acromegaly: development and psychometric properties. Clin Endocrinol (Oxf) 2002;57:251–258.

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Frequently asked questions about privacy and IT governance in relation to ACRODAT

Is a mobile application required for this asset?
  • No – ACRODAT is an online software which requires no installation and can be accessed simply via a URL.
What type of personal data is collected?
  • End user data: healthcare professional email address, password, healthcare professional name and surname, clinic name.
  • Patient data: Patient e-mail address, patient ID, patient initials, year of birth, gender, diagnosis, visit date, IGF-1 levels and normal range, tumour status, comorbidities, symptoms, health related quality of life (ACROQoL), treatment change (if any) and reason.
Is the processing adequate, relevant and limited to what is necessary (data minimisation)?
  • Yes, data minimisation has been considered and patient ID is the only mandatory field.
Who is the data controller?
  • The centre is the exclusive data controller. It is their responsibility to ensure patient data’s accuracy and explain to patients how their data are stored/used.
  • Pfizer is the data controller of the end user data.
Can information be deleted?
  • Yes, healthcare professionals can request the support team for their account to be deleted and delete patient’s data any time.
Can a patient’s NHS number be used for their ID?
  • Yes, this may help centres to compare ACRODAT records to information on their own databases such as patient notes.
How will this information be used? How will Pfizer specifically be using this information?
  • The patient information will be used by the centre to enhance clinical decision making. Due to data being in one place, it will then be quicker to assess during consultations. Graphs can be shared with the patient as a tool to explain treatment and outcomes.
  •  Pfizer uses clinic and End User (physician) data:

(a) for the registration and administration of Clinic / End User accounts and providing access to authorised End Users;

(b) to track and assess use of ACRODAT by de-identified data;

(c) to send notifications of application outages or updates (including suspensions of End User accounts and withdrawal of ACRODAT);

(d) to respond to requests for support; and

(e) to record details of which End User account has been used to create, view and update any patient records and/or End User data.

What is the legal basis for the processing/sharing of the information?
  • Consent.
How can patient consent be captured?
  • It is the centre’s responsibility to inform the patient about the collection, storage and processing of their data and obtain consent. We can provide a consent advice template to help with this process, just ask your local representative to find out more.
Who will have access to patient information and what controls are in place to protect this information?
  • Any healthcare professional with access to ACRODAT at the same centre can view the patient information entered into the tool. The third-party provider of the tool, Kelyon, will also have access to the patient information. Kelyon is ISO 27001 certified (Amazon AWS provider) and abide by multiple security controls and policies.
What information/data will Pfizer have access to?
  • All patient information is de-identified by the third-party provider, Kelyon, before being sent to Pfizer. Pfizer will then receive de-identified aggregated statistics on the number of End Users using ACRODAT in each country and the number of patients with whom ACRODAT has been used. Pfizer will use these statistics in order to assess how ACRODAT is used and to improve its functionality and performance.
Who will be responsible for monitoring the contract with the third-party supplier?
  • Pfizer.
What information sharing protocols and operational agreements exist with the third-party processor, Kelyon?
  • ISO 27001 certifies (Amazon AWS provider)
  • Kelyon Information Security Policy rev.2
  • Kelyon User and Access Administration rev1
  • Kelyon BCP Business Continuity Plan
Will the third-party processor, Kelyon, access, process or host the data in compliance with the Data Protection Act?
  • Yes.
Which are the conditions for transfer to third countries or international organisations?
  • Kelyon is registered and holds data in EEA. Information is not transferred or processed outside of this area.

 

 

 

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