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Table 2 Discussion questions posed to the participants of the Independent Expert Panel meetinga

From: Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases

1. Identification and engagement of companies  
 1.1. Are there any conditions under which a patient advocacy organization should not be in contact with a pharmaceutical company?  
 1.2. Are there criteria a patient advocacy organization should use to decide whether or which companies to contact?  
 1.3. What information should a patient advocacy organization expect a company to share?  
 1.4. What information should a company expect a patient advocacy organization to share?  
2. Patient engagement  
 2.1. Should a patient advocacy organization be involved in direct interaction between a patient and a pharmaceutical company? What does “involvement” in this case mean?  
 2.2. Are there circumstances under which a patient advocacy organization should not be involved in direct dialogue between patients and companies?  
 2.3. What are the reasons behind this recommendation?  
 2.4. For formal disease insight, is an advisory board preferred over individual input? Are there circumstances under which individual input is preferred or acceptable?  
3. Financial contributions  
 3.1. Should patient groups accept financial contributions from pharmaceutical companies? If so, under what circumstances?  
 3.2. By what mechanisms should a patient group receive contributions? What processes should be in place for receiving and reporting the contribution?  
 3.3. Should patient group leaders accept honoraria for speaking on behalf of their organization?  
 3.4. Are there circumstances under which a patient advocacy organization could/should operate as a paid service provider to a pharmaceutical company?  
4. Clinical trial communications  
 4.1. What is the role of a patient advocacy organization in “supporting” clinical trials?  
 4.2. Should a patient advocacy organization have criteria for which clinical trials it will “support”?  
 4.3. What role, if any, should a patient advocacy organization have in guiding or advising conversations about clinical trial participation on social media?  
 4.4. Should leaders of patient advocacy organizations (board members and other volunteer leaders) follow organizational practices when writing or speaking in personal blogs or other social media as a parent, family member, or affected individual?  
5. Patient privacy  
 5.1. What role does a patient advocacy organization have in ensuring that pharmaceutical companies adequately protect patient privacy in surveys, advisory boards, or other community engagement?  
  1. a The questions listed herein apply to sections 1 through 5 of the Guidelines for Engagement with Pharmaceutical Companies by The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) [18]
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