Research is one of the important issues for any patient organisation to be informed about and, if so desired, to be involved in. IMP has been and still is building on its network with the leading researchers into mitochondrial disease in the world. And with success. IMP is meeting researchers on a regular basis. And the researchers now are finding their way to IMP. As a consequence there is a lively dialogue between researchers and IMP, where both parties truly understand that they need each other.

This dialogue makes it possible for IMP to be well informed about the latest research developments concerning mitochondrial disease from wherever in the world. This enables IMP to publish up-to-date information on its website.

Additionally researchers have found their way to IMP. The international community of mitochondrial specialists is very much aware of the importance of the patient’s perspective in their research studies.

Patient participation in clinical research is growing to be an essential part of studies and projects. Involving patients as partners in clinical research adds value to the content of the study. Simply because patients are the end users of the outcomes of studies. Patients ask different questions and have different expectations of a therapy or a cure.

Many authorities offering grants for clinical research make it mandatory that patient groups are involved in a study or at least are supporting it. In many cases patient groups play an active role in a study, such as in defining the outcome measures or in the discussion on the set up of a study or in disseminating the results of the study to the patient community.

IMP is receiving more and more requests from researchers to participate in or support a research study. In order to manage such requests in a professional manner, ensuring full understanding of the scientific content and making a thorough and patient-oriented judgement, IMP has officially established a Scientific Committee in April 2016.

Members of the Scientific Committee are:

• Julio Montoya, prof.dr., Department of Biochemistry, and Molecular and Cellular Biology, University of Zaragoza, Spain, active and strongly involved in AEPMI, the Spanish patient organisation for mitochondrial patients and families.
• Dr Lyndsey Butterworth, PhD in Mitochondrial Studies, Newcastle University, UK; Research Associate in the Wellcome Centre for
  Mitochondrial Research (WCMR), Newcastle University, UK; Science Communication Lead for The Lily Foundation charity. Has worked in mitochondrial research for over 18 years, gaining an in-depth knowledge of the field and developing an extensive network of contacts within the mitochondrial community.

IMP does not, at this moment, fund any research studies.

Naturally, the required working procedures are in place. A few important ones are listed here:

1. IMP reviews studies from a patient’s point of view (relevance for patients, answer to needs and questions of patients, adds to quality of life and health of patients, burden for patients involved in the trials, etc. etc. )
2. All information provided to the Scientific Committee and to the board of IMP is considered to be confidential.
3. The Scientific Committee advises the board of IMP, which takes the final decision and issues any official statements, if requested.
4. In order to review the studies in a professional manner the Scientific Committee will need approximately 2 – 3 weeks. Therefore, any requests should be made timely.
5. Requests to the Scientific Committee of IMP can be sent to: This email address is being protected from spambots. You need JavaScript enabled to view it.